Mouth Sores, Skin Rash and Chemo Brain

[AustinsMom]

Austin is just finishing week two of his first round of BEP. Tomorrow he gets his third bleo push.
Since he looked and felt great all week, we decided to "get outta Dodge" for a long week-end to relax and enjoy the "calm before the storm" at the beach. As luck would have it , no sooner do we arrive, when Austin begins complaining about his mouth and I notice what looks like cold sores. I had the C-Larry's Magic Mouthwash with us, wihich he has been using, but to no avail and his poor lips look puffy. Having braces on isn't helping either. I believe this is from the Bleo, which means tomorrow it could get worse. Any other suggestions?
On top of that, Austin appears to have rash that looks like acne, kind of, but he's never had anything like it before. To add insult to injury, he started "shedding" everywhere, just like everyone says. He finally let me chop his hair down to about an inch in length. It was then I also noticed this rash on his neck and back. Could this be from chemo or meds? Will it go away or is there antything to treat it?

And when it rains, it pours, so it seems. All of a sudden, we are noticing Austin has become quieter than normal and has this dazed look on his face and his mind seems to be a million miles away. My husband and I keep asking him if he's feeling OK, if he feels foggy or anything is bothering him, to which he responds that he feels fine. It is really difficult to stand by when it feels like he is mentally slipping away. Today I did some research on this phenomena and see that it can last for several years post chemo and really impact quality of life. I know others have mentioned experiencing what is referred to as "chemo brain" and wonder if this sounds like what is now affecting Austin? Is this something that most find passes after BEP chemo or has anyone found they are still plagued by it?

These are all questions I will pose to the Nurse and PA tomorrow and possibly email our Oncologist about, but wanted to get some others input and advise from those who have "been there, done that" !!

Thanks,
Diane

[Kat]

The mouth sores and rash are most likely from the chemo and NOT from the other meds. You should call the nurse on call and let her know, and she can tell you what is safe for him to take. It will most likely be benadryl, but I don't want to tell you to give him something that hasn't been cleared by his doctor first. In the meantime, don't use anything with harsh perfumes or dyes--stick with gentle soap like baby wash or dove, avoid detergents or fabric softener with lots of perfumes/dyes. My husband got to a point where he couldn't use his regular deodorant because it caused a rash---he had to switch to a gentler one. For his mouth, I'm not familiar with the mouthwash he's using, but you could always try another brand of tea tree oil mouthwash, and stick with very basic toothpaste, like arm & hammer, that is pretty much just baking soda and peroxide. He should also frequently rinse his mouth with lukewarm water.
He might just be spaced out because he's spaced out--and tired--and a teenager--and this is his life. It's perfectly normal for him to need a little time to space out. It may be chemobrain, and if it is, there's nothing to be done about it, so don't worry. Let the nurse know when you talk to her, but there's nothing to freak out about, there.
But, you should call the nurse about the rash before it gets worse. It's always easier to handle things before they get out of control.
It'll allllll be over before you know it, and Austin can get back to whatever it is that teenage boys do. ;-)
Best wishes,

[AustinsMom]

Geesh...you're fast! Thanks...again...for all the great suggestions. Oddly enough, I was giving Austin Benadryl until a few nights ago and stopped when he didn!t seem to need it any longer for nausea and to sleep. Maybe that's why this all seems to be happening at once....besisdes the fogginess of course....?? But, doesn't Benadryl knock you out?

As for the " chemo brain ", I am thinking about asking if ADD medicine might help. Think I read something about that somewhere.

Diane

[Kat]

Heh--benadryl is always a life-saver, isn't it? For some people, benadryl makes them sleepy, and for others, it makes them wired. Really, don't worry about him sleeping so much. I know it seems like a lot, but ...it's not. It's normal. I know, "normal" doesn't mean much anymore, right? ;-)

And, really, don't worry about the fogginess right now. There isn't a med that's going to make that go away, as far as I know. It's normal for that to occur, and it will lessen up once this is over with. You guys are just getting into the time period where it's very common, and mostly has to do with fatigue. If he doesn't want to talk because he's groggy----he doesn't need to. If he wants to sleep all day---let him. The main things to worry about (if you NEED something to worry about ;-) ) are vomiting, severe constipation, severe rashes, allergic reactions, diarrhea, severe headaches, severe ear-ringing, swelling of extremities, fevers, infections. Anything outside of those---don't freak out. :-) If you can avoid all of those things, chemo is a walk in the park. (Kidding!!!! No one yell at me for that!)

Best wishes,

[Wesmom]

My son broke out with the rash too when he went through Chemo. His Oncologist didn't know what to do so he sent Wes to a dermatologist. Wes's rash turned black and now his back has black spots and claw marks. Did anyone advise you to keep Austin from scratching? That's where Wes's claw marks came from. As far as the Chemo brain goes, Wes became very quiet the last 2 cycles. He wouldn't talk to anyone and his grandparents didn't understand. I left him alone, because he knew I was upstairs if he needed anything. What do you say to someone who is miserable from nausea, metal taste in the mouth, constipated, etc? All you can do is tell them you love them and you are there for them if they need something. As always, everyone has different experiences from chemo. Sorry. I didn't mean to go on and on. Hope Austin feels better soon.

[AustinsMom]

Thanks so much for your replies.

Austin went in for his Bleo push today and the PA told my husband the 3 sores in Austin's mouth ( they look like fever blisters) are NOT from the bleo, but are HERPES!! I almost fell over when I received that text!! After further research I am assuming he is referring to Herpes 1. He did a swab, but no results yet. So I am a little confused. What the Doctor said was that they could be caused by his low blood counts. This is all new territory to me, however, it's easy to see that a WBC of 2360 and especially an ANC of 90 are something to be watched carefully. He said the sore in the mouth are usually the first indication of a low WBC count. So, then is it the fact that the bleo causes the WBC count to drop, which in turn causes the sores? In any case he gave us a prescription for FAMCICLOVIR. Poor kid sounds like he has marbles in his mouth.

So six hours later, still no fever or chills, but I will continue to monitor. What I am not clear about is ....how long will these counts stay like this? This won't continue until after he is done with chemo will it? We have tutors scheduled to come to our home the rest of the week. As long as they're healthy do you think it's OK? My husband didn't get any specific instructions other than to call if his temp is over 100.4 !

Kat, I went out and bought all the supplies you suggested so we're good to go. I also picked up the Kytril........is that stuff made of 24k GOLD !! Even the generic with insurance really expensive....but hey, if it keeps Austin from vomiting...it's worth every penny.

Wesmom, Yes I did recently hear about the scratching from Heidi. The Doctor (PA) did not seemed concerned about the rash and it does not seem to itch, it just looks awful!

Diane

[Davepet]

So, then is it the fact that the bleo causes the WBC count to drop, which in turn causes the sores?

If I recall correctly Bleo does not affect the WBC, it's one of the other drugs. If I had to guess I'd say the Cisplaten, but I'm sure others will chime in with correct info if needed.

His counts will stay low for a period of time post chemo, it's difficult to say how long. Is his doc giving him the Nuelasta or Nuepogen shots?

You might want to consider a surgical mask if a lot of outsiders will be seeing him. Always better to be safe.

Dave

[Ny01]

Diane,

Sorry to hear about Austin's mouth sores. That's got to be very annoying for him. I've been brushing with saltwater toothpast from Whole Foods and so far "knock on wood", so good. I just started my 2nd round of BEP today and actually writing this while finishing up a bag of Etoposide. The dreaded Bleo is next. I'm hoping no fever/shakes this time. Last two times wiped me out pretty good. I'm 39 yrs old and the 1st round of BEP gave me pretty nasty acne and some small rashes in the 2nd week. The good news is they went away in the 3rd week. The "chemo brain" I had/have that pretty bad. I felt stoned in a bad way. Almost like I was in one of those depression commercials. No energy, didn't want to see/speak to anyone, brain felt like a vegetable. I deemed myslef not fit to drive and this is coming from a guy who loves cars and even test drove a NASCAR earlier this year. I feel so bad for my amazing caregiver girlfriend who sits around with this guy that doesnt barely rememeber anything or have a throught to say. Normally, im a pretty humorous and witty guy. And yes, I read about plenty of people online that this can last for a while after chemo. I surely hope and pray not, as I am an executive of a company and need my brain back ASAP after this is over. For most people, it does come back. In fact the last couple days of my 3rd week, I did feel mentally more engaging and upbeat. Sure enough though, my brain Fog returned when I got my pre-meds(steroids) prior to my Cisplatin today. Back to zombie mode for me. I hope and pray (see i said that twice I'm so out of it) this lifts after its all over and from the many posters I've emailed it seems to sometime between a few weeks to a couple months after the chemo is over. If you hear of any remedies or info, please let me know. Good luck with everything. You are being a great mom that Austin will one day look back on and say THANK YOU SO MUCH!!

Best Regards,

NY01 the current chemo zombie also known as Rob

[Fed]

If I recall correctly Bleo does not affect the WBC, it's one of the other drugs. If I had to guess I'd say the Cisplaten, but I'm sure others will chime in with correct info if needed.

You are right. Etoposide is responsible for the drop in WBC, with cisplatin close behind. Bleomycin does not cause neutropenia.

[AustinsMom]

Austin began shivering on and off last evening, but with no temperature. Decided to check again before heading to bed. His temperature was 100.8, so we were told to bring him up to the Hopkins ER and ended up behind admitted. He is being blasted with a couple of different antibiotics. Poor thing can barely talk and we are told it most likely will be a few days before he gets any relief from what the staff is referring to as HSV.....I think that's what they said. A pain management team came in and are hooking him up with a PCA of morphine to help with that. Thankfully, his ANC went up to 130, but we have been told he needs to be hospitalized until both the mouth pain and his counts stabilize.

I feel so terrible for him. We tried to be so extra diligent about germs and general health and hygiene practices and to no avail.

Thanks for all the continued advice and support.

Diane

[Paul54]

Just another reason to hate this %&#*@% disease, especially for what it does to kids. I feel so bad for Austin. He hasn't done anything to deserve this, and neither have you. Thanks for being wonderful parents. Hugs and prayers for Austin.
Paul

PS: I'm going to be in Columbia on business this coming Thursday. If it was possible to help by kicking Austin's TC in the ass for a while, I would.

[Ny01]

Diane,

Sorry you guys had to go to the ER. He's getting good care now and will be back home better in no time. I went to the ER after my 2nd Bleo push with a fever and nasty MRSA infection of my nose. I stayed until Thursday when my blood CPU was stabilized and I felt better. I was supposed to be there till Friday, but I became restless and was feeling better so I negotiated an out. The scary thing was the next Monday (my 3rd Bleo) I felt fine until 7p and then sure enough cold shiver followed by low fever. My doc said anything above 100.5 and I had to call him. My temp hovered in the 99 - 100.6 (even while on Tylenol) and yet I was so afraid to have to go back to ER again. I told my girlfriend if it got to 101 I would call my doc. It got to 101.1, but I'm stubborn and frankly was fearful of the dragged out ER process and putting my girlfriend through that the night before her busy workday again. So we put some cold towels on my head and shoulders and it went back down to 99.8-100.3. I tried to watch tv feeling miserable until 3:30a when the fever finally broke. I took a xanax and felt better the next day. Bleo is tough. Now here's what's weird/interesting. I've been admitted to hospital for my 2nd 5 day round this week and last night was given my 4th Bleo after the P&E. I fully expected to get shakes/fever sometime in the night, but I got nothing. Temp was good all night and never got the shakes. I believe the pre-meds must have pushed it off as I didn't react the first week either. I'll ask my doc about it and what will be the game plan in light of this info for next weeks 5th Bleo when I will be at home. If he gives me some advice, I'll surely pass it on. Bleo shakes/fever really stinks and ERs make it 5x more annoying. Good luck with everything.

Best Regards,

Rob

[Kat]

Going back to a question you asked earlier about the WBC counts---no, they do not just stay down. They will go up and down and up and down throughout. There will be some days that aren't so bad.

HSV=herpes simplex virus. Most people are infected---that's what gives you cold sores, but usually only when your immune system is compromised. Hence, when you get a cold, sometimes you get a cold sore, too, to add insult to injury. ;-) My husband was exposed to shingles (which is also in the herpes family) during his last week of his last cycle, when his counts were REALLY low (0.1), and he had to do a full round of Valtrex as a preventative, which luckily did the trick, and he did not break out into shingles, which would have surely had him hospitalized for quite some time. So, I'm glad that Austin is already admitted and getting IV meds to get that virus under control. Poor little guy.

Rob, how many cycles are you doing? And, yes, absolutely, taking the "pre meds" helps tremendously with getting the Bleo reaction under control. My husband's last Bleo was a walk in the park compared with the first, because we loaded him up with everything under the sun before he had that last one.

Diane----yes, I think it's funny how much the Kytril costs, when you think about the Cisplatin---since the cisplatin is MADE OF PLATINUM. So, yeah, you'd think Kytril was made of rare diamonds or angels or something. Our insurance paid something like $2600 for it? For like 9 pills or something? And I think the first co-pay was 80 something? It went down after that. Either way, totally worth it. Another thing is that our insurance stomached the payment better if it went in his IV bag instead of orally. So, they'd put it in his bad in the morning, and he took it orally at night. You might want to look into that---for us, if it went in his bag, it was included in the copay for the visit that day, and we didn't pay for it at all. Nifty.

Best wishes to Rob and Austin! And Celeste and Diane! It'll all be over before you know it, and you'll be talking about how funny your hair is growing back. :-)

[River Blue]

Hi Diane, I just wanted to let you know that I'm thinking of you. I'm so sorry that you had to take Austin to the ER, but hopefully he will get to go home again soon. I remember when I had braces I would get mouth sores that were classified as herpes, but I was nowhere near being sexually active, so don't freak! I'm sure it's just due to the meds and hopefully one of your mouthwashes is helping because I know those things hurt. Hang in there! Each bad day is just another day closer to this all being over, and Austin being cancer free.

[AustinsMom]

Thanks for all the great support. My husband just relieved me at the hospital so I could come home and rest for awhile and catch up on "stuff".

Austin is really struggling. He began vomiting last evening and it continued again today. As of early this morning, his ANC is rising, but still only 175. He has no fever, but his mouth sores are still prevalent and his lips are swollen. Now his hair, which I had planned to really 'trim" this week, is rubbing off on the back and leaving bald patches and his scalp and skin are tender. He still has the rash and has been itchy all over, even with Benadryl, though I have been careful about reminding him not to scratch, but his back is the worst. The meds for nausea ( IV Kytril) and heart burn (Zanax) just aren't helping. He is on morphine for his mouth pain which they think has irritated his bladder, since every 15 minutes he will say he needs to pee, with no luck. So they just gave him Valium a short while ago. Sometime in the middle of the night he pointed to his ears, telling me they were ringing, but thankfully has not said anything more. Just today he had to ask what the writing on the TV screen said and when questioned said it was blurry. I haven't had a chance to ask the Doctor about it. To add insult to injury,he woke me up at about 5:00 AM telling me to call for the nurse because he had bad chest pain. My heart was racing. Turns out he had somehow pulled the needle out of his port and it scratched himself!

Our Oncologist stopped in yesterday to check up on Austin and said it can take a few days before the mouth sores heal. I know we could handle them again, but I am at my wit's end with the constant nausea and heartburn. The poor guy can barely walk to the bathroom on his own and it's just so hard to watch and know we going to put him through so much more.The Nurses, Doctors and Staff are all wonderful, and I want to trust they are doing all they can, however Austin is being treated at Johns Hopkins, which is a teaching hospital and the Doctors that are controlling his meds are Fellows that come through with a small entourage during the day and a lone Resident at night, so I hope they are ordering the right drugs and dosages.

Well, I'm done venting for now. Hope everyone else is doing well!
Diane

[1lessball2answr]

Thinking of you both every single day.

xx

Patrick

[Wesmom]

Vent all you want. That's what we're here for after all. Hope Austin starts feeling better soon.

[James' Mum]

Diane, I'm really sorry that things are so tough right now. I just wanted to say that James' vision was more blurred while he was having chemo. I had his eyes tested afterwards to make sure that it was nothing permanent and they were fine by then.

I hope Austin's mouth sores heal soon and that they can get on top of his nausea. Thinking of you.

Amanda.

[S P]

Hi Diane, so sorry to hear that Austin is having a rough time with things. If I can help in any way, please do let me know. Just remember that as hard of a beat down as he's getting from the chemo, it's going far far worse for the stupid cancer!

I do remember after my first round of EP I spiked a pretty big fever and had the chills. Everybody in the house had been sick for the past few weeks except for me so I knew it was coming. I woke up in the middle of the night and had sweat through all of my clothes and even the bed. Everything was soaking wet! Very dangerous. I probably should have gone to the ER, but I woke up and everything was fine and no more fever. Scary stuff. Hang in there!

[mpbro]

haven't read all the replies but wanted to let you know that I had good success with prescription xylocaine as a topical numbing agent for mouth sores. My oncologist gave me a prescription on Saturday, instant relief. Good news is the mouth sores were only a problem for a week or so, but man, I had a real problem with them.

Morgan

[a mom]

Diane,
I'm so sorry to hear Austin is having such a hard time. I wish I had some advice. Hang in there. Take care of yourself. It will all be better soon.

[AustinsMom]

Hi Everybody,

I've been away for a few days, totally overwhelmed with Austin's care. Things did not improve as quickly as we hoped and yesterday morning, our Oncologist confirmed he agreed. We checked Austin this past Monday Evening and finally his ANC count went from 90 to 730, so they gave us our walking papers around 2 PM yesterday. We actually had a little scare at 1:00 AM on Thursday when he f i n a l l y put his bed down and tried to go to sleep, only to jump up ten seconds later with shooting pain in his other testicle which brought in the Nurse, the Doctor and 5 minutes later a rolling Ultrasound Machine. Thankfully, they found nothing and the pain subsided. Anyhow, we couldn't wait to get out of there!! But,or I should say BUTT, as luck would have it, at about the same time almost 6 days of Miralax finally caught up with Austin , so it was closer to 4:45 when we finally made our escape.

All the days seem blurry now, but his fever went down and never returned the entire time we were there. So, we arrived home ready to enjoy a quiet relaxed evening. My sister and I shaved Austin's head since his hair just disinegrated in the hospital and he took a long hot shower. We were exhausted and famished, so called for take out. As I'm ordering the food Austin walks into my office with the thermometer reading 100.8. I just wanted to cry!! Long story short, we ended back up in the ER...... with our P.F. Changs Bag waiting patiently out in the car. They did blood tests, put him back on Antibiotics and told us to sit tight in a secluded room. We took turns running out to the car to wolf down our first real meal of the day and I think the staff must have thought we were drug addicts running out to get a fix !! Finally, his temperature came down, even better, his ANC was over 3000 and whatever other counts they looked at were all normal and we were cleared to go.

So....we are back home, but after feeling so good last week, this was a real let down. The nausea was bad for a couple of days, but the heartburn/indigestion was/is just awful and nothing seems to work. We have Ranitidine now, so I hope that helps. The mouth sores were horrific looking and his lips are still swollen to the point where he drools. All the Doctors and Nurses assured us that once his counts started improving they would as well. He's been on Morphine, Valium. Kytril, Oxycodone, Ativan Benadryl and has been using the Magic Mouthwash for instant relief. Oh, and let me tell you.... the "Butt Paste" the Doctor ordered for us is Austin's new best friend ! Our Doctors finally decided that Austin's braces need to come out as they feel they are not only making it more difficult to keep his mouth clean, but were irritating the lining of his mouth and making matters much worse. So, we are delaying Round 2, and those babies are coming off on Monday. Tuesday we will have his mouth accessed to see if they feel he is ready. Then they are going to make arrangements to finish up the week cross the hall in the in patient department, which may just not be a bad idea. Our Oncologist feels we will be better prepared this round with Kytril, more Emend, if needed, and lack of braces. I really feel like we are preparing for a battle here....but as you have all reassured me....we WILL win the war!!

Thanks so much for all the advice and support! Hope everyone is doing well.

Diane

[cbvance]

Wow! You guys have been through hell already but it sounds like you are through the first wave. It is wonderful that Austin has a supportive team of caregivers you guys are doing an awesome job. I am thankful that Austin has finally gotten to go home and his counts are coming up. I'll continue to pray for him to gain strength for the battle and yes he will win the war and soon put this miserable chapter of his life behind him. Call the chapter "Destroying Cancer!"

Your attitude and strength in this are an inspiration, thanks for the update.

[AustinsMom]

Thanks cbvance......

I have been following your story and your encouraging words of support to others on this sight. Austin's doing much better now that his mouth sores have cleared up and he had his braces removed today, so hopefully the Doctors will clear him to begin Round 2 when we go into the clinic tomorrow. He's just really tired still and doesn't have much of an appetite, but at least he's staying hydrated. So.....we're hoping this round is less dramatic.

Wishing you the best,
Diane

[hbr777]

Mouth sores from chemo and cuts from braces. Holy hades. On top of chemo. Here's to a less eventful round #2.