How do I prepare to support boyfriend going through chemo?

[River Blue]

My boyfriend is about to start BEPx3 on Monday. We are both trying to enjoy this last weekend before the chemo begins, but we are both consumed by anxiety. I feel very grateful that he has a very high chance of being cured after this, we just need to get through these nine weeks. The doctor hasn't given us really any information on how to prepare. Do we show up Monday with laptops and music to entertain him for the 9-5 treatment? What should he wear? Do I need to bring pillows, magazines, a blanket, crossword puzzles, snacks? I have no idea what to expect!

[zbot]

Deffinately bring laptops or books or something. They usually have pillows and blankets there (I don't know about where you're going, but where I was going they did). Some places have a suite with a bunch of chairs like mine, and some places are just a bunch of hospital rooms with beds and televisions. The chairs at my place had a massage setting which was really nice, but it could be a little noisy when your trying to sleep, so he should bring headphones to drown out the noise. Or you could take the opportunity to socialize with people that are going through a similar situation as you. He should probably wear sweat pants or pajama pants, you know comfortable stuff. Deffinately bring your own food, because the food they had at my place were cheese/peanut butter crackers and club soda. Other than that, just keep him company and keep supporting him and you guys will be just fine best of luck!

[River Blue]

Thank you! The more I read on this site, the better.

[Davepet]

I wore jeans & a polo shirt. I had a port & the polo shirt made it easy to access. I read several books during chemo, I thought about bringing a laptop, but seemed like too much hassle to me. Pillows & blankets were provided, some folks brought their own anyway, I was fine with what they had.

I brought a sandwich & some snacks as well, he's gonna be in that chair for a long time, so distractions of any sort are good. I would periodically doze off, which is why I preferred books to movies, easier to just pick up were you left off.

Hope that helps.

Good luck!
Dave

[AustinsMom]

Hi River Blue,

I am glad you asked those questions as I have thinking about them as well. My son is beginning BEP this coming Saturday, so he'll be right behind your boyfriend.

I believe I read that the sound of the machines disbursing the chemo meds can be loud and that good headphones are helpful. I know where we are, at John Hopkins, the rooms are private, but that is not always the case. Austin went to the hospital website last night looking for information and, as a 16 year old, was delighted to see they offer 24 hour "room service" in the Oncology Ward ( yeah....JUST like being on a cruise ), but that is only for the patient I'm sure.... and who knows what they serve or what he'll want to eat. I was also thinking of hard candy or mints to take away the metallic taste as well as bottled flavored waters?? Also maybe ginger snaps or something similar to help a queasy stomach.

In terms of food for you, most hospitals that I have been in in recent years have a really good selection of items with plentiful salad bar choices. I would ask about bringing food of any sort up to the chemo ward with you though, since there might be restrictions on certain items that could potentially harm an individual with a compromised immune system ( i.e. fresh fruits).

I am pretty certain you will have access to a TV. We saw a video room with a bunch of movies and games to borrow as well as an XBOX 360 , Wii and whatever those other gaming systems are called. Magazines are a great idea. I am going to bring along a Kindle, Ipad, Itouch, journal and camera and homework assignments as well.

I hope things go as smoothly as possible for you both this week. If you have any tips or suggestions......please pass them along. As much as I dread this treatment, I am anxious to get it going......and finished!!

Wishing you the best,
Diane

[Kat]

Yes, bring things to entertain yourselves!!!
At the place where my husband got chemo, there are TVs mounted on the wall, but it's not like each patient has their own, so you don't want to get stuck watching soaps all day because the old lady next to you can't miss the Young and the Restless.
The chemo infusion machines are not really loud, and you get used to the sound pretty quickly. But, headphones are nice if you need to block out the conversations around you, and to make sure whatever you are watching on the laptop or iPad doesn't annoy those around you.
We packed a lunch most days, and tons of snacks for throughout the day. Also, bring a nice big water bottle, as he will need to drink ... and drink... and drink, all day and all night long to flush the chemo out of his kidneys and ears. The more hydrated he stays, they better he will feel, and the better his ears will do. The cisplatin has a tendency to pool in your ears, and can cause a ringing sensation.
If he's doing Bleo, bring candy or gum or something for him to suck on while he gets the Bleo shot, because it gives them a horrible metallic taste in their mouths for a little while.
We brought our own blankets and pillows and things, just for the comfort-from-home factor, and to not cross germs with anyone else there.
After the first few days, my husband started sleeping most of the day that we were there, so I had to bring things to entertain myself, too!
Remember to stock up on Lysol and Purell for around the house, and to wash your hands (and his) like a crazy person, especially before eating, etc.
Before you know it, it'll be routine, and also before you know it, it will be over and behind you!

Best wishes,

[a mom]

River Blue and Diane - good luck next week. My son started BEP last Monday so we are just a week ahead of you. My son downloaded movies on his laptop to keep himself entertained, but they also had an assortment of DVDs available for patients to use. I stayed with him the first couple of days, but after that I sensed he wanted some alone time so I went off on my own. I downloaded a bunch of menus from restaurants nearby, and he would text me his lunch order. I think he sort of enjoyed that (although it does get expensive.) I brought a backpack with me with enough stuff to keep me entertained for a week: knitting, books, magazines, all my son's medical information, and a notebook where I kept track of daily questions, information, symptoms, appointments, phone numbers, etc, etc. My son developed heartburn so I bring his medicine for that. And of course, drinks and snacks.

Best of luck to you.

[Smilemjc22]

My son will be starting his 2nd round of BEP on Thursday. He went through the first round really well, He drank a ton of water, I mean water, water water and he said the more he drank the better he felt. Be comfortable the first day its long, just cause they have to explain everything, the actual chemo will not take from 9 to 5. We too thought it was going to take that long to get the chemo treatment, so we were releaved that alot of the 1st day was explaining and learning. I wish you much luck, the rx's will really help with the nausea so stay ahead if he needs it. You will be ok, just remember breathe in and out and take notes it will help give you something to do. For me that helped anyways. Again, good luck to you both.

Niki

[River Blue]

Thanks for all of the advice! I feel as ready as I can be, and will definitely check back in tomorrow night to describe how day one goes for us. We were grocery shopping today, and trying to find brands at Whole Foods from what we read on the forum this weekend. In a perfect world, doctors would send patients home with "chemo care packages" to take some of the mystery out of what to buy in advance.

[Kat]

Good luck to everyone starting chemo tomorrow!
You know, Patrick's oncologist's office had a chemo class that you had to take the week before you started, and they DID give us lists! The lists of no-no foods, the lists of yes foods, the the lists of this and that and blah blah blah. The thing with food is that his tastes will change--and quickly. The most true thing they told us was that eating during chemo is like eating during pregnancy---weird cravings, sometimes you hate your favorite things, etc. Patrick developed an intense need for mashed potatoes, like every single flippin' day. And he was/is very thin, so any weird craving he had, I made sure to give it to him, because he lost a lot of weight with the double-whammy of RPLND and then chemo. So, just be ready to roll with the punches, and you'll be just f i n e. :-)
Oh, and remember to microwave things like cold cuts and fast food when his immune system gets depleted, to make sure he doesn't pick up any weird bugs.
So---water, water, water! And wash, wash, wash!
It'll be over before you know it!
Best wishes,

[Davepet]

We were grocery shopping today, and trying to find brands at Whole Foods from what we read on the forum this weekend. In a perfect world, doctors would send patients home with "chemo care packages" to take some of the mystery out of what to buy in advance.

Hope you didn't go overboard on the food. Every person is different in what they want to eat during chemo. There were some items I normally like that I couldn't stand to even smell, & others I rarely crave that became diet staples.
Afraid there is no way to predict that until the chemo gets underway...

Keep asking questions as they come up & be sure to let us know how it's going.

Dave

[AustinsMom]

Sorry River Blue.......hope I'm not highjacking your board....

We are scheduled for a consultation sometime this week where I suspect they will address many of these last minute details. GREAT TO GET ALL THESE TIPS! I expect day 1 will take longer, but what about the rest of the days? Is it typically 3...5...7...hours start to finish? And what about the days when you come in just for Bleo?

I am also curious about these Neulasta (?) shots. Does everybody get them....cause they don't sound like a whole lotta fun! Then do I understand correctly that you also have to self inject at home? The fun just never ends......

I am trying to keep a running list of all the medications to counter the medications....Emend, Prilosec, a Margarita, Ativan,Thorazine, Aleve, a Cosmopolitan, Protonix, Claritan, Medical Marijuana ,a Pina Colada, Magical Mouth Wash, Zanax....... Oy Veh ......did I leave anything out??

Good luck tomorrow !!

[Kat]

That sounds about right, Austin'sMom.

The categories of the drugs-you-take-to-counter-the-drugs are kind of:
things to keep you from puking (ativan, emend, steroids, kytril, phenergen, etc.);
things to stop digestive problems (protonix, miralax, prilosec, etc.);
things to keep your skin from falling apart (baby shampoo, baby wash, gentle moisturizers, sunscreen, WATER!, tea tree mouth rinse--NOT listerine---no flossing!!!! or at least, gentle only--etc.).

Again, remember that taste will change, so you can't really predict the weird food situation, and have to roll with it as it comes along.

As for the schedule, every center does it slightly differently. My husband would see the doctor on Mondays, and have a full day of BEP. That was usually about 8:30-4 pm. Tuesday through Friday was just EP, no doctor, and was about 8:30 till 2 or 3. On just bleo days, he would see the doctor, get an IV bag of anti-emetics (Kytril) and fluids, and the bleo push, which took about 2 hours all in all. As chemo went on through the days and weeks, we were there longer and longer, because he required more IV fluids AND because they slowed his EP drip to avoid tinnitis (ringing in the ears).

As for neulasta, NO, not everyone gets it. Generally speaking, you don't get it unless you really need it. My husband's WBC counts got down to 0.1 or something, and he still didn't get the neupagen because he was a low-infection risk (I stayed home with him, no kids, no random exposure) and he only did two rounds. So, when his counts got really low, he wasn't allowed to go to places with lots of people, we couldn't have people over, if he needed to go out, he'd have to wear a mask, etc. You just take more precautions. I can't emphasize the hand-washing and sanitizer enough!
With three BEP, if your counts get down close to zero, then, yeah, expect to do the neupagen. There are also drugs they can give you to help with the neupagen. Have a lot of benadryl around, too, because that can help with the chemo-itchies that sometimes occur.

As always, make sure you run EVERY drug past the onco FIRST to get the go-ahead.

Keep the questions coming---they're all good ones, and they're all relevant to the topic!

Best wishes,

[a mom]

My son's EP lasts 4 hours. Tomorrow will be his first B (without the EP) so I'll know more then. I also want to say that he seems to be feeling slightly worse on days 6 - 8 than 1 - 5.

[hbr777]

One tip: the days can be long. Instead of a chair, ask for a bed. My husband was much more comfortable, and was able to sleep.

If he hasn't a port, a heating pad can do wonders for sore arms/veins, and make access easier if it used before and after chemo.

The anti-nausea drugs can be constipating.

If the cancer cell type is the type that has elevated b-HCG, be careful with medical marijuana as the THC in it can falsely elevate b-HCG. Not to mention the Bleo and the smoke/lungs stuff are probably not the best idea.

Godspeed to you both as the guys embark on the chemo journey.

[hbr777]

Tylenol and Claritin before the Bleo push can help with the side effects. Ask the nurses - they always gave it to my husband.

[River Blue]

Kat, thanks for the microwave tip. We love In and Out and I never would have thought to microwave it first.

Dave, I think I went a little overboard on the food, but mostly non-perishables so if he isn't keen on my selections, I'll just save them for me. I've pretty much moved in to be as supportive as possible. Nothing like chemo to take a relationship to a new level!

AustinsMom, no worries! Highjack all you like, I'm learning from your questions as well. I'm sure Austin will bounce back like a champ.

We arrived at 9am and our center is pretty comfortable. Water and tea here, pillows with disposable covers, and I think I saw blankets, but we haven't needed them yet. The nurse gave us reading material: Cancer Guide, a Patient Resource, and a bunch of internet print outs regarding the medications he is receiving today.

Our nurse said she treated an 18 year old who is now playing college basketball, so that was reassuring. I heard her talking to a nearby patient who said he is starting his third round of chemo today. He looks healthy, has all of his hair, and said he hadn't had any nausea! not sure if he is here for TC, but still, nice to see one of the lucky ones to know it's possible to suffer minimal side effects.

I'm definitely bringing my laptop next time I come as typing this isn't easy on a phone. Everyone here is on an ipad or laptop, I don't see a tv. Magazines are here, but I'm definitely going to use this as an excuse to start reading The Hunger Games.

[CancerSux]

Glad to hear the first day is going wellas well as can be expected. Our chemo center only had tv's in the private rooms, but after the Ativan Kel always slept.

I'm definitely going to use this as an excuse to start reading The Hunger Games.

Good reads! I devoured all 3 books in a week, and the first is definitely the best.

There is another thread on good books to read about cancer, including some humorous ones, found here.

[AustinsMom]

Hi River Blue, So glad things seemed to go so smoothly today. It must be a relief to have the first day over with!

Kat, Heidi, a mom and Tracy......thanks for all the great tips. I 'll have to start stocking up. I was only kidding about the medical marijuana and the alcohol......at least for Austin I thought the Claritin was to help with the Neulasta, but it's for the Bleo? Hadn't thought about the baby shampoo, Benydryl or the "no flossing". Good to know.

Our Oncologist called today and said the first day was going to be just EP, the second day will add on the B. I can't believe how much of the time is spent just hydrating! I swear he said 2 hours before and 4 after? He did say they give Zofran (?) prior to starting, I believe, but adjustments can always be made to other meds.

Because Hopkins just opened their new Childrens Center and they are moving ( right next door) next week, as luck would have it, we have to start chemo Saturday as an in-patient and stay until Sunday night, then return Monday, Tuesday and Wednesday as an out patient. Anyhow, our Doctor said Austin will remain hooked up to the IV ALL NIGHT LONG, but they can "turn it down" as long as his urine is clear. I'm thinking even so, he's going to be up...... so I'm going to be up....... ALL NIGHT....... so he can get to the bathroom to pee !! Do you think they make DEPENDS for teenage boys?

Well, anyhow......good luck with everything tomorrow River Blue. Hope you get some reading time in !

Diane

[Davepet]

Not sure why they would be feeding him IV liquids all night long, are you sure they are n't just leaving the IV in place to avoid unnecessary sticks?

[River Blue]

Thanks, Diane! Unfortunately I have to return to work tomorrow, but I'll be able to drive him there and pick him up. If the second and/or third rounds get to be more intense, I think my employer will be understanding and let me take a leave of absence.

He is feeling ok after day one (only 62 more days to go!), but is complaining of brain fog and the jitters. He feels like he is kind of loopy and can't think straight, and is also amped up from the steroids that were in the anti-nausea IV today. He wants to communicate with people from his office, but feels so foggy/disoriented that it's difficult. Has anyone experienced this brain fog feeling before?

I am so grateful that the nausea can be controlled so well these days by meds, but it feels like managing the side effects of them all could be a full-time job!

Tracy, thanks so much for the link to the good books, I will definitely look into them.

We are now just debating whether or not to shave his head before the hair starts falling out on it's own. We're also going to shave his arm hair tonight, otherwise it gets ripped out by the IV everyday. I'm grateful for the kind patients who gave us words of encouragement today.

Thank you to everyone here for reading, and adding your own questions/comments. Best wishes to you all!

[AustinsMom]

Hi Celeste .......(I like River Blue.......but it sounds more like I'm conversing with an Album Cover Title or Romance Novel !! )

Hopefully someone will jump in here and answer your question about the first day "jitters" and "brain fog". There is another poster on this board who JUST posed the exact same question!
I know our Oncologist mentioned today that they do give you steroids right in the beginning of the first day of treatment. Also I recall another member, Socialfiremedic I believe, had complained about that same restless feeling and once the steroids were cut in half, the issue resolved. As for the fogginess, I know people talk about "chemo brain" quite often, which sounds like what your BF is experiencing, and is very common. I thought it came on later, but, you know everyone seems to react differently.

Sorry I can't be of any more help. I know what you mean about managing the side effects. It occurred to me when Heidi mentioned the anti nausea drugs can be constipating. Oh great.......so now we need to take something for the constipation.........which will cause a rash.......so we need some ointment.....which will cause hiccups.........yada, yada, yada!!!

Davepet, Hi.....I think the Doctor said it was just good to keep Austin as hydrated as possible. It may have to do with the fact they are letting us come into the hospital in the early afternoon, (so Austin can make his rehearsal,) and then beginning the next dose the following day around noon.....making it less than 24 hours. Does that make sense?! He's getting a port placed on Thursday, so wouldn't they just use that? Speaking of which, do you know if they're a pain to keep sterile and infection free? The pictures Mike posted recently look like that is so, so uncomfortable.

Diane

[CancerSux]

Chemo-brain is a real phenomenon, but it is not normally felt this early on. It is more likely the 'auxiliary' meds ... is he getting ativan too? Managing the s/e can be a lot of work, but it is also MUCH better than experiencing those s/e. Once you know how your boyfriend (and son, for Diane) will react, it gets easier. Often with the pain meds they will automatically prescribe Dulcolax. No drugs are really without s/e ... some are just more noticeable than others.

For the head - you've got a little bit of time before the hair will start to fall out. It is usually in the 3rd week of the first cycle, I think. We shaved Kel's when it started - who wants to wake up to clumps of hair on the pillow, right? OUCH on the arm hair!

He's getting a port placed on Thursday, so wouldn't they just use that? Speaking of which, do you know if they're a pain to keep sterile and infection free?

Diane - they are under the skin, so sterility and infection aren't too big of a problem provided the person accessing it for chemo uses sterile technique (swabs with alcohol, etc). It will have to be flushed monthly to prevent clots, but that is only if they leave it in post-chemo. Kel's will stay in until he reaches a year. Hmmmm, we will probably have to address that soon, actually

T

[Davepet]

He's getting a port placed on Thursday, so wouldn't they just use that? Speaking of which, do you know if they're a pain to keep sterile and infection free? The pictures Mike posted recently look like that is so, so uncomfortable.

Diane

Ports are completely under the skin so are perfectly sterile, as long as sterile procedures are followed when accessing them. Mine looked uncomfortable but wasn't , took a little bit to get used to it though.

Also,sounds like they will just have an IV in over-nite, so he should have no problem wheeling in the tower to get to the bathroom.

Dave

[Kat]

Chemobrain: yes, that happens. With Patrick, it happened very quickly, too. Though, as Tracy pointed out, it could well be due to all the million drugs OTHER than the chemo. I think a large component of chemobrain is actually just exhaustion.
Ports: are awesome. If his skin is sensitive, you can ask that they put a topical numbing stuff on it before they prick him every day. They don't really get infected, which is why they are super awesome, but yes, they can be uncomfortable and really just weird, when you think about it. Remember to wear a button up shirt to be able to reach it easier.
Peeing: there will be a lot of peeing. He'll get used to it. Eventually, he'll be so tired that waking up to pee and going right back to sleep will be easy. For you? No. Every time you hear him wake up, you will wake up. And sit there. And think about how he's awake. That was a hard one for me. But, I didn't have cancer, so I shouldn't whine.
Pooing: yes, the million drugs can cause problems with constipation. Tracy mentioned Dulcolax, but my husband was put on Miralax for the duration of ...everything. RPLND, chemo, all of it. And it worked just fine.
Digestion: pay attention to the digestive issues, because they can be easily resolved with (yet more) drugs. One that Patrick had, which from the boards sounds like a common one, is weird, painful hiccups, and severe heartburn/acid reflux. They started him on Prilosec, which didn't work, changed him to Protonix, which did. Everyone is different in this regard, I think.
Tissue sensitivity: keep an eye out for rashes, skin irritation, especially in his mouth. You don't want to get those darned sores.
Hair: Patrick's hair started to fall out in the third week, but everyone is different. The first thing you'll notice is that it stops growing, right off the bat, before it starts to fall out. This becomes particularly amusing when it starts to grow BACK. Patrick had two layers of eyelashes---some old, dead long ones that managed to hang on, and short, stubby new ones about a month after he finished chemo. It was pretty odd. But, we shaved his head the first week just to avoid the mess, because he has luxurious male-hair-model hair. ;-) Once the hair decides to fall out for real, it REALLY comes out, like you could wipe it off with your hand. The whole thing is surreal. Oh, also remember that ALLLLLL his hair will fall out, so ..... yeah. Don't forget the pits & pubes when he decides to have his shaving-party. ;-) When Patick's hair grew back it was super curly (he has straight hair) and lighter brown with reddish tinges (his hair is almost black). It went back to normal about a year after chemo.
I think I missed something? Oh, yeah, In & Out. Yummmmm. Remember to go easy on the cheeses, as they can make the stomach distress or constipation worse. But try telling that to my husband who said, "I'd rather never poop again than not have cheese." And, really, the cheese didn't bother him, but I think it bothers a lot of people.
;-)
Best wishes,

[Davepet]

He is feeling ok after day one (only 62 more days to go!), but is complaining of brain fog and the jitters. He feels like he is kind of loopy and can't think straight, and is also amped up from the steroids that were in the anti-nausea IV today.

My doc reduced the steroid meds because my heart would start racing from time to time, the meds worked just as well & the problem decreased.

He wants to communicate with people from his office, but feels so foggy/disoriented that it's difficult. Has anyone experienced this brain fog feeling before?

Some guys are able to work & others cannot, I wasn't terribly foggy, but when they gave me the pre-med Benedryl, it knocked me out for a while

I am so grateful that the nausea can be controlled so well these days by meds, but it feels like managing the side effects of them all could be a full-time job!

Well wait & see, I had very few problems from the nausea meds, everyone is different in how they feel during chemo.

We are now just debating whether or not to shave his head before the hair starts falling out on it's own. !

I waited until it started to fall out & then shaved it. My arms , legs, eyebrows & eyelashes never completely fell out, but they all got quite thin. My hair started falling out on the Tue of the third week, in the shower getting ready for my third bleo.

Dave

[Davepet]

Ports: are awesome. If his skin is sensitive, you can ask that they put a topical numbing stuff on it before they prick him every day.

I was giver an Rx for lidocane that I put on as I was getting ready to go for treatment. It wasn't bad without it (I forgot a few time) but couldn't even feel it when I remembered.

[CW406]

Late to the party, but my main takeaways were 1) drink a lot of water and 2) don't get constipated.

Before I did chemo, I did not think constipation was a real phenomenon. "What do you mean, you 'can't go'?" Oh my, yes, it is very real. Once it gets bad it gets very bad.

Also if you have the option to do neulasta before you need it I would take it. This is one of those things I don't understand. Some doctors wait until the patients' counts completely crash and then try to bring them back up. In my experience it seems like it is often an uphill battle from there. At my oncologist's firm, the largest in Northern VA, the rule is every patient gets neulasta, period. I know my personal sample size is only one, but I never had to worry about infections, etc as my counts were through the roof.

[AustinsMom]

I'm back hijacking again Celeste All these suggestions are SO, SO helpful!!

We meet with our Oncologist and Nurse on Friday to discuss all the misc. stuff before Chemo. Right now I feel like I am having "sympathy chemo brain" though!! All these questions just keep popping up though.

The Doctor did say they would put numbing gel on the port prior to needle insertion, but I'm hoping they supply it and I don't need to bring it in like you did Dave!! Austin actually has to come home Thursday with the needle in the port until Saturday, since it is being placed so close to his start date. Otherwise, because it is so tender for the first several days, we were told it would be painful to insert it.

All these other meds.... like Claritin, Prilosec, Dulcolax, and the "magic mouthwash" you all talk about. Should I go buy these or do they have to be administered at the Hospital?

Thanks,
Diane

[Davepet]

The Doctor did say they would put numbing gel on the port prior to needle insertion, but I'm hoping they supply it and I don't need to bring it in like you did Dave!!

I had the creme at home, Diane & applied it after my shower on treatment days, then drove about 40 minutes to the treatment center so the area was *very* numb by the time they accessed the port..

All these other meds.... like Claritin, Prilosec, Dulcolax, and the "magic mouthwash" you all talk about. Should I go buy these or do they have to be administered at the Hospital?

"magic Mouthwash" isn't available, each doc has their own formula & my doc's was very expensive. I chose to not get it & only had sores for a few days in one of the cycles. In any event you don't need it unless he gets sores.

Your doc should write prescriptions for most of the things he thinks you may need. I only used a few of one of the anti nausea pills , never needed more than that. I live far from a pharmacy so it was good to know they were handy if I did need them.

Any other meds can be purchased if needed, IMHO. I found the weekend days after my long weeks were when I felt the worst, so keep that in mind.

Dave

[River Blue]

Hi again! I found that last night was much better than the night after day one. He just seemed calmer and not as jittery from the steroids. Granted, we did request they reduce that medication which they did by 20%. He felt a little nausea so he took his first prescription anti-nausea, one of many we picked up at CVS over the weekend.

I think if we had been reading this forum earlier in advance, we would have fed him more fiber rich foods the week leading to starting the chemo because the anti-nausea meds have made him a bit stopped up. We went to CVS yesterday to get Miralax and anti-bacterial hand sanitizer for the car, etc. , which we should have purchased in advance. But like Dave said, you could wait to see what you need as everyone is different. Our care center has a pharmacy on the ground level, but we find CVS to be cheaper so we go on the way home.

Thankfully no mouth sores yet, although he is now brushing with a salt-toothpaste from Whole Foods and ringsing with baking soda and water, just to be on the preventative safe side.

Dreading next week as we fear that he will feel worse then, but for the time being, I'm still saying "so far so good."

[Ny01]

As I sit here in the chair getting my chemo meds infused and reading the above comment, I have to say how lucky I am to have River Blue as my girlfriend! Love you!

[AustinsMom]

Oh.....duh.......I thought it was SO weird that two posters came on board around the EXACT same time, starting chemo at the EXACT same time with almost identical symptoms. Only one was a guy....who mentions his unbelievably supportive GF..... and the girl is talking about her awesome BF!!! Awwwwwwh......you two are so ADORABLE!!

AND Ny01.......you better hang on to her.... she sounds like a keeper !!! ....but obviously you're worth it!!

Hope things are going well today. Did you get a good night's sleep last night?

Diane

[River Blue]

Oops, Diane I accidentally hijacked d'smom "son diagnosed" thread and responded to you there.

[hbr777]

At my oncologist's firm, the largest in Northern VA, the rule is every patient gets neulasta, period. I know my personal sample size is only one, but I never had to worry about infections, etc as my counts were through the roof.

It was the same at Duke. After round one, it was just given and my husband's counts never crashed. A lot of time, though, I think it has to do with insurance coverage and what insurers will pay for it.

[hbr777]

All these other meds.... like Claritin, Prilosec, Dulcolax, and the "magic mouthwash" you all talk about. Should I go buy these or do they have to be administered at the Hospital?

Thanks,
Diane

They supplied the Claritin/Benedryl and Tylenol if it is part of their protocol for the Bleo - you don't need to provide it. The Prilosec you need to buy OTC. If it doesn't do the job, you can get a prescription for Protonix. The acid reflux was the side effect that totally took us by surprise. The mouthwash is also by prescription.

[River Blue]

I'm not sure how many BEPX3 patients receive their chemo treatments in the hospital, but that's where we are. We made it through the first week and I thought everything was going pretty well. The weekend wasn't too bad. Sure, he was tired and felt really achey, but no vomiting or fevers. Sunday night was when the s*%$ hit the fan. He had three meals Sunday, then just as it was time for bed, he had horrible chest indigestion. The pains were so bad he said it felt like a heart attack. I had taken half a bennadryl to help me sleep before an important meeting Monday morning, which I regretted. Note to caregivers: don't take any medications that make you drowsy unless you have extra help around the house. He was lying on the floor moaning and hoping the heartburn medication would kick in, but didn't want me to call the doctor. I insisted he sit up and drink a real ginger ale from Whole Foods, which caused him to let out a big burp. I think it definitely helped.

Made it to my meeting at 8am Monday and left at 10am to take him to his 11am follow-up appointment and shot of Bleo. He was very weak walking to the car, and had a weird rash on his forehead, face, and neck. They took his bloodwork and his potassium was low. On Thursday of week one, he felt a pimple inside his nose. He has had staph infections over the last few years, and suspected one was developing, so the doctor took a culture on Friday during his chemo. Unfortunately doc confirmed it was staph, and even worse, MRSA. He told us to walk across the street to the ER, which was scary to say the least. Once we got to the ER waiting room, the chills from the Bleo came. Severe chills causing his whole body to shake. I covered him in blankets and ten minutes later he is drenched in sweat. Went back and forth like this for a while, but his fever never went higher than 100.8. They admitted him to the hospital after hours in the ER, and we have been here for two nights thus far. Mainly he is getting hyrdration with potassium in the IV, but he's also been receiving pain meds and an antibiotic for his staph.

He has been complaining that his arms hurt so bad from all the IVs. His poor arms are like two pin cushions. It was impossible for him to get a full night of sleep last week because of the adrenaline caused by the steroids in the anti-nausea medication, now this week because of the hourly checks from the nurses. But after two bottles of magnesium citrate, he has finally had his first bowel movement in about a week and half. Hallelujah!!!

The rash seems to be gone and his spirits are lifted now that the stomach issues have been solved. Thankfully no mouth sores (still brushing teeth with salt toothpaste) yet. Oh and a nurse told us today that many of her cancer patients say that sometimes whne they feel nauseous, smelling a fresh lemon slice will solve the problem. Not sure why, but we appreciate any words from the wise we can get!

He is dreading going back to round two as this first round was no walk in the park. The doctor said he will most likely have admitted in the hospital again for round two. We'll see. I know I'll be prepared next time with an overnight bag though! Oh and last but not least, I can't believe I forgot to mention two side effects that he has complained about the most. Ringing in the ears and brain fog. Sadly we can't do anything to help either one of these. Nausea, fevers and chills come and go, constipation can be helped, etc. However, we can't find anything to help the ringing of the ears, and the doctor just says it will happen when the chemo is in his body. He didn't experience this until Sunday night after week one, and it's been coming and going since then. The brain fog is something I can only compare to maybe being stoned? But not in a good way. He can't concentrate, loses his train of thought, and can't function to his usual level of intellect. We have researched this online and I think his biggest fear is that he will have permanent ear ringing and/or brain fog. All I can do is pray they will disappear when we finish.

[zbot]

I'm sorry to hear about his symptoms, I hope he's feeling better. I can relate to the bad heartburn. One day after bleo I went to town on an all-you-can-eat chinese buffet and regretted it for days. Don't worry about the brain-fog or the ringing in the ears, they'll go away after chemo and usually fade in between cycles. Brain fog (or as it is known by patients as chemo brain) is like being stoned, but without the funny parts, so your just left with forgetfullness and mindlessly staring at things for long periods of time for no reason. It sounds like you are a great caregiver, so keep up the good work, you're already a third of the way there!

[AustinsMom]

Hi Celeste,

And I thought we had a rough week! How awful to end up in the ER and then hospital like that. There seem to be so many side effects from the BEP that are treated with medications that produce other side effects...it's mind boggling.

Has your BF considered getting a port? Austin had one put in last week. He is still tender and black and blue, but it made all the tests and chemo easier.

Indigestion seems to be a reoccurring theme with Chemo. I was reminded by one of the Doctors who popped in this afternoon that Cisplatin is considered one of the "tougher" chemo meds, especially on the digestive system. Austin had been doing really well until today when we finished up day 5. He was sick the entire 30 minute drive home from the clinic. Constipation has set in as well for him, so I'm upping the meds for that.

The ear ringing sounds awful. Recently I read somewhere on this sight there is some medication that can help with that. I'll try to go back at find it. The "Chemobrain" is very weird, but with all the other drugs these guys are getting that cause drowsiness I'm not surprised to see that.

Why will your BF have to go back into the hospital again for the next round? Is it because of the staph infection (which sounds horrible) or the Bleo ( which sounds equally as horrible) ? That reaction he had must be the "shake and bake" I have seen others refer to.
I am totally not looking forward to that. I guess thats why the Nurse said Austin would be getting Tylenol prior to the Bleo.

How's your BF's appetite? Yesterday ( day 4), I noticed a drop and today Austin barely ate and hardly moved for that matter. I know everyone says hydrate, hydrate, hydrate, but when you're not feeling well, it's hard. That is one GOOD thing about being stuck in the hospital. They keep fluids going constantly and monitor those meds for you as well.

I hope things improve for you both this week. Keep us posted!

Diane

[Davepet]

Unfortunately, the ringing in the ears doesn't always go away, I still have it 24/7, the good news is I rarely notice it anymore, only when I think about it. (like now,of course ;o) )

I only got bleo chills bad once, so there's a chance he won't get them again.


Dianne, it's most important to hydrate just before, during & right after the treatments. The goal is to flush the drugs from kidneys quickly. While hydration is still good for him at other times, it's not as critical, so don't sweat it too much.

Dave

[River Blue]

Thanks, Zbot! I can’t imagine what an all-you-can-eat Chinese Buffet binge would have done to him if my mashed potatoes put him on the floor!

Diane: Thanks for the encouragement. I’m glad Austin is doing fairly well. We hadn’t really considered a port before, but maybe he will after his arm soreness this week. His doctor is thinking that a hospital stay for the next round might just be safer as he reacted badly to the Bleo last time, we’re not sure though. It seems like everything he experienced is just part of chemo, nothing too out of the ordinary or by any means life threatening. Like the shake and bake – ha! Funny name. It was scary, but chills and fevers pass. But I’m sure his staph adds another risk, especially because it never really disappears because of its resistant powers. His appetite has actually been pretty good except for Monday when everything fell apart. However once he was settled in the hospital Monday night, I saw his appetite return Tuesday and he’s been eating well since. Is Austin feeling better and having more of an appetite post day 4?

Dave: I’m sorry that you’re one of the people whose ear ringing didn’t leave with the chemo. It’s reassuring to know that it doesn’t bother you too badly, and I’ll try to stop bringing it up so you don’t’ have to think about it.

Hopefully doc will send him home today or tomorrow morning, but thankfully he seemed well enough that I went home to sleep last night and am back at work today. Taking it a day at a time!!!

[Davepet]

Dave: I’m sorry that you’re one of the people whose ear ringing didn’t leave with the chemo. It’s reassuring to know that it doesn’t bother you too badly, and I’ll try to stop bringing it up so you don’t’ have to think about it.

No, better to let us know how he's doing. I'd really like to hear that it goes away for him. I had some tendency toward tinnitus before chemo, so it's wasn't surprising the chemo made it permanent.

[Kat]

My husband had the ear-ringing and the horrific heartburn, too.
With the ear-ringing you can ask them to slow the drip and give MORE IV fluids. This made it much less awful for my husband. Of course, then you're there for even more hours, but if he's doing it inpatient, who cares, right? His ear ringing did go away within about a month or two after chemo. And my husband had the wicked chemobrain, too, and peripheral neuropathy in his feet and hands, but not until the second round, so be ready for that freak out. My husband couldn't hold a pen in his hands by the end of week one of round two, which freaked him OUT. But, that resolved itself, too. So, when your boyfriend freaks out about it, remind him it will be okay.
Did they put him on meds for the heartburn? If one pill doesn't work, try another, or see if they can give him several. My husband was one of those people who refused to take an advil when he would have a headache....before he got cancer. The nursing staff explained to him, "look, we're pumping you full of poison, so, yeah, take the damn pill, it's not gonna kill you!" His heartburn was so bad that they put some type of heartburn med in his IV bag and he took one orally at night. And, yes, the crap hit the fan right about the same time as it did for you! When doubled over in stomach agony, Patrick said to me, "the burning means it's working, right?"
That staph crap is tricky, and it's best not to mess around with it, and get yourself right to the ER each time. Did they go over the MRSA rules with you, about bleaching stuff, and disinfecting, and blah blah blah?
Best wishes to you for an easier second round! It'll all be over before you know it.

[AustinsMom]

Hi Celeste,

Good to hear things are a bit better today. I'm sure your BF will be happy to get back home in his own bed...... and to your mashed potatoes! Hopefully the next Bleo won't be so.....traumatic. Poor guy...and poor you.
Do you mind me asking, how long did the "shake and bake" last?

Austin has been sleeping for close to 22 hours today ( day 6). After all the vomiting on the ride home yesterday, he has barely had a bite to eat and felt sick again today. I feel so bad for him. As much as I feel like I'm constantly telling him to stop eating too many snacks and nagging him to get off FB, turn off the TV, quit all the constant texting etc., now I'd give anything to see him jump up and go for it! Maybe tomorrow.

Davespet: Austin said his head was spinning today, but has not mentioned anything with his ears. When you talk about them "ringing", is it that same sound that people get in usually just one ear that is like a hum, lasting maybe a minute? Which drug is that from....it's not the Bleo is it?

Also, regarding Bleo, did your BF, or you Davespet, get tylenol prior to the push? Just wondering if that makes any difference at all.

Hope all is well!!
Diane

[Davepet]

Davepet: Austin said his head was spinning today, but has not mentioned anything with his ears. When you talk about them "ringing", is it that same sound that people get in usually just one ear that is like a hum, lasting maybe a minute? Which drug is that from....it's not the Bleo is it?

It's a high frequency whine in both earsaround 4 khz :
http://www.phys.unsw.edu.au/jw/hearing.html if you want an example
I think I read it was the cisplatin that cause the nerve damage, but don't quote me on that.

Also, regarding Bleo, did your BF, or you Davepet, get tylenol prior to the push? Just wondering if that makes any difference at all.

You know after I had the shakes & reported them to my doc I did get a tylenol before each bleo, I'd forgotten that. Never had the problem except that one time.

Hope that helps,

Dave

[River Blue]

Hi Diane,
He didn’t receive any Tylenol before his Bleo, but I will ask about that on Monday and hopefully it will help! His shake and bake lasted a few hours, it’s hard to remember exactly because it was the time we spent waiting in the waiting room and ER, by the time we got admitted to a room he was better. But that process did take a few hours. Ugh! I hope Austin is feeling better. He’ll be a FB and texting madman again before you know it. I know boyfriend was relieved that he finally got a good nights sleep last night, being home from the hospital in his own bed without nurses coming in every hour. Hooray!

Kat,
Thanks for the tips on the ringing ears. He was still complaining of this last night when we got home from the hospital and today. The other night he said he couldn’t feel his little toe, is that the peripheral neuropathy? Thanks for the warning either way. My boyfriend is like your husband in that he doesn’t want to take any more meds than he absolutely HAS to (men, right?!). He hasn’t had real bad heartburn like he did last Sunday night, but I’ll keep two pills in mind in case it comes back. Unfortunately he is one of those rare birds who experiences practically every bad side effect of medications, so I understand him wanting to avoid them at all cost. But we are making it through. And yes, they gave us the MRSA rundown, so hopefully that will just stay on the backburner like it is for now.

[Kat]

It's the platinum in the cisplatin, the Platinol (usually the brand name of the drug), or the "P" in the BEP, that causes the ear ringing. It's caused by platinum pooling in the ear drums. A high amount of fluids and slowing the "P" drip can decrease the severity of it. The ear ringing will not be as bad during the Bleo-only weeks. The main side effect my husband had with the bleo was, of course, the instant sensation of chewing on metal, and then about 4-24 hours after, he would feel like he was run over by a dumptruck.
Yes, the peripheral neuropathy occurs in the hands/fingers and feet/toes. It can range from burning, tingling, stinging, or numbness, to full on pain and inability to manipulate the fingers and toes. Now that I think about it, yes, he had it in his feet, too.
I know the boys don't want to take the "extra" drugs, but it's the "extra" drugs (the pills and things) that make the HORRIBLE drugs (the BEP) not kill you. On the first day of chemo, the onco nurses explained to my husband that if he throws up AT ALL, he was to call them immediately, because, they said, "if he's throwing up, WE aren't doing our job---this ain't your grandparents' chemo." There is ALWAYS something else they can give you for nausea. Yes, it might knock you on your butt and you'll sleep for a day, but that's better than throwing up. Remind them it's not a manliness issue with the vomiting---it's a hydration issue. If they get dehydrated, it can cause permanent damage to their kidneys. So, man up and take your darned anti-emetic pills, boys!!!!! Throwing up is for pregnancy, NOT for chemo. ;-)

[AustinsMom]

Hi Kat,

River Blue has graciously allowed me to "highjack" her thread now and then, since Austin and her BF are currently going through BEP, although they're a week ahead of us.( And I hope the poor guy is feeling better today River Blue!!) I have some questions to ask you though Kat!

I not exactly sure what to expect with the Bleo shot that Austin is scheduled to receive on Monday. People seem to have a wide range of reactions. When you mention your husband felt as though he had been run over by a truck, I'm envisioning something different than the "shake and bake" I keep hearing about. Can you expand on what his symptoms were? Also, am I correct in assuming that the reaction guys get from the Bleo on the 2nd and 3rd weeks is different than during the first week? Soon after his first dose Austin commented about the funny metal taste in his mouth, but that was about the extent of it.

As for the neuropathy, is that something that we should expect at certain times within each cycle? Is there any remedy for that? Does it go away quickly?

Your comment about vomiting got me thinking as well! Shortly after treatment on day 5 Austin became extremely nauseous and vomited ( in the car on the way home). For the next two days he was plagued by nausea ( gave him Zofran and Ativan) constipation ( Senna and Miralax) and this weird belching/ dry heaves that followed. The on- call Resident suggest we give him Zantac for that, along with Gatorade to keep him hydrated. Aside from when he was sleeping, it was a rough 2-3 days. Do you know of any other medications for nausea that you found worked well? All three anti-emetics stated the dosage as 1-2 pills as needed. In hindsight, we probably should have gone with the higher dosage, but were worried about increasing the constipation problem and until I saw other guys were sleeping non-stop at first, we didn't realize that was normal, so didn't want to overdue it with the meds.

My last question has to do with hydration. Are there any guidelines on how much fluid one should take in during chemo and how long afterwards should we be concerned with flushing the toxins out? All we've been told is to hydrate as much as possible and he certainly got a lot of fluids during treatments. I did notice some guys stating that their chemo sessions were much shorter than Austin's. He was given 2 hours of fluids before and 4 hours after each treatment, for a total of 8 1/2 hours each day. I'm thinking he was getting more hydrating as a pediatric patient maybe than the "adults" do? We tried to get him to drink as much as possible, even waking him up just to drink a little here and there, but wish we had a better idea of an amount we should strive for.

Thanks for any advice!!
Diane

[Kat]

Hi AustinsMom and RiverBlue---

I wouldn't really call it REAL hijacking, since you guys have a lot of the same questions/issues right now. Let's just call it commiserating! ;-)

So, one by one.....

Bleo. People do, indeed, have a wide range of reactions. It was kind of like this---he got the shot, tasted metal in his mouth (more than usual that you get with the E & P), and that was it. Then, about 4 hours after we'd get home, he would get incredibly weak. Like, can't get up or down the stairs weak. He said every muscle in his body ached. His temp would rise a bit, and we *almost* went to the ER once because he got right on the line. The best comparison I could think of would be a severe flu mixed with an anxiety attack. And then he'd have to take phenergan and he'd sleep and sleep from that afternoon until the next day, only waking to eat and pee. The really horrible part would usually ease up within about 24 hours. But, with each shot, it got worse, and longer to recover from it.

The neuropathy is different for everyone, too. Some people get it, some don't. Patrick had it within the first couple days after the end of the first week, and it got progressively worse as it went on. His completely disappeared within 6-8 weeks after the end of chemo, but again, different for everyone. Some people do have continuous problems with it, but it's usually the folks who have very lengthy or repeated treatments. Remember, all of this is based on cumulative effect. It would improve during week three of each cycle, but was otherwise progressive. So, pretty much as soon as he stopped receiving treatment, it would start to get better.

Nausea. Patrick's nausea seemed directly related to how bad his heartburn got, and whether he stayed hydrated enough. We were told that people who were prone to motion sickness usually had more nausea than others. Patrick does not get motion sickness, and he never threw up during chemo. If he didn't drink enough water, his heartburn would get worse, he'd get nauseous. Luckily, he figured that out quickly. The drugs he was prescribed for nausea were Kytril and dexamethasone on a regular schedule, and then he could add Phenergan as needed. The Phenergan is the one that knocks you OUT. But, it works quite promptly---I'd say within 20 minutes. Also, if vomiting becomes uncontrollable, you can get Phenergan suppositories or get an injection of it at the ER. For the anti-emetics, if the doctor has prescribed "1-2 tabs," and his reactions to BEP have been that dramatic, don't waste time with 1. Just take the two, if he's allowed.

Heartburn/indigestion. Patrick was originally given Prilosec, which did virtually nothing. Then they started giving him Prilosec in his bag before treatment in the morning, and Protonix orally at night. They can also double the dosage of Protonix if he doesn't respond to one pill.

As for the constipation issue, if Senna and Miralax aren't working, make sure he's up the maximum allowable dosage. Of course, do not exceed it. But, just take it. If that doesn't work, let the doctor know so that he can try something more drastic. There's ALWAYS something more drastic to try. ;-)

Unless you are at or exceeding the maximum prescription dosage for the medications as recommended by his doctor, do not worry about overdoing it on the drugs that are there to make him not throw up. These are the important ones. There's no reason for him to suffer unnecessarily. Not throwing up is REALLY important. And, yeah, most of these boys end up sleeping their way through chemo, and that's kind of good for them, so they won't remember most of it. However, we "drivers" remember all of it. ;-)

Hydration! Wow, I have a number for you. This is, of course, what Patrick's onco told him to take, and you should run it by your respective oncologists. But, they had him drinking, at a minimum, 64 ounces of water---not "fluid," but actual water---per day. We got a bottle that held 32 ounces, and his goal was to finish the whole thing before we left the clinic at 3pm. Then, he had to finish a second one by bedtime. He also usually drank at least 8-12 ounces of gatorade per day. There were days he drank a LOT more than that, though, as super cold water was one of the few things that made him feel better. Yes, my husband usually got about 2 hours of other "stuff" before his actual chemo drip. He would get fluids, kytril, and prilosec in the bag first. By the second round, he was getting drip magnesium, too. The days get long! I am not familiar with the differences in the protocols for adult treatment versus pediatric treatment, but on a wild guess, I'd say they aren't that different. Perhaps CancerSux or Fed can weigh in on this one? I'd say that if Austin isn't waking up in the night to pee, he's probably not drinking enough water. I mean, it really is an obscene amount of water that is necessary on the following days: E&P days and 2-3 days after, Bleo days and 1-2 days after, and the day before any treatment. The other days, he doesn't have to drink AS much, but the water will make him feel less awful.

Is that all of it? Whew! Keep it coming, ladies. I'm on a roll.

Best wishes,

[River Blue]

Thanks for all that info, Kat! So the second shot of Bleo today went much better than the one last Monday. However he just all over went into the day feeling better than he did last week. He took two Tylenol orally before the Bleo, and so far has had no shake n bake, or major symptoms. He’s still having the ringing in the ears and is now complaining of heartburn, but no fever, chills, or nausea (knock on wood). The anxiety and weakness/fatigue have been present pretty much every day since he started, so I don’t think the Bleo made that any worse. He takes Xanax to help him fall asleep, but still wakes up in the night to pee. I got up for work and left around 7:30am, he said he couldn’t fall asleep after I left.

Actually , he just got the chills while I was writing this. He took the two Tylenol five hours ago, so just took one more and hopefully the chills will pass. Now we are “off” for the rest of the week until we go back next Monday at 8am for chemo round two. Diana I hope Austin is feeling ok!