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How do I prepare to support boyfriend going through chemo?

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  • #16
    Tylenol and Claritin before the Bleo push can help with the side effects. Ask the nurses - they always gave it to my husband.
    Heidi

    Husband - age 51
    10/20/10 - Primary mediastinal seminoma - 10 x 9.3 cm; -HCG = 33 (<2.6); AFP = 3.5 (<9); LDH = 274 (100-200 )
    11/1/10 4X BEP
    12/7/10 End Cycle 2 - -HCG = 2; AFP = 4.6; LDH = 139 ; 4XBEP changed to 3 as tumor now 2.1 x 3.7 cm
    2/15/11 - Post-chemo PET ; residual 8 mm x 2 cm
    6/29/11 - Lung nodules stable or smaller, chest mass continues to shrink & markers all normal
    Surveillance since 6/11

    Comment


    • #17
      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.
      Last edited by River Blue; 04-16-12, 02:19 PM. Reason: Spelling
      loving girlfriend to 39 year old cancer survivor


      march 2010 R/T stage 1A seminoma
      surveillance
      march 2012 recurrence, right inguinal lymph node 3cm
      stage 2B seminoma
      april 2012 BEPx3
      august 2012 cancer free

      Comment


      • #18
        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.

        Originally posted by River Blue View Post
        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.
        Tracy
        Cancer pharmacologist, caregiver blog here

        Wife to Kel, dx 12/30/11 Stage IIIc (poor) embyronal, AFP 13700, 10x11 cm retroperitoneal mass, 1 cm^2 lung met
        Left I/O 12/31/10.
        4xBEP 1-4/11, AFP=22, 5*7 RP mass, tx failed
        1.5 x VeIP 5-6/11; tx failed, AFP/b-hCG rising
        Salvage RPLND @Indy 6/29/11, metastatic mixed germ cell tumor with yolk sac, seminoma and teratoma
        Remission! AFP steady since 9/2011; 2+ years ALL CLEAR

        Comment


        • #19
          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
          Cook/Maid/Chauffeur/ATM Machine/Personal Asst. to Austin

          12/07/11 I/O AFP: 291 hCG: 151
          12/08/11 CT Scan, Xrays - clear
          12/15/11 Non Seminoma Stage1-B
          EC, Teratoma, Yolk Sac, Intratubular
          4/21/12 Relapse- Start 3XBEP
          6/25/12 Finished BEP
          7/02/12 Markers and CT Scan normal
          10/3/12 3 month post-chemo check-up - All Clear!
          2/28/13 8 month post-chemo check-up - All Clear!
          6/30/13 ONE YEAR- ALL CLEAR!!
          2/14/14 20 month post-chemo check-up - All Clear!

          Comment


          • #20
            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?
            Jan, 1975: Right I/O, followed by RPLND
            Dec, 2009: Left I/O, followed by 3xBEP

            Comment


            • #21
              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!
              Last edited by River Blue; 04-17-12, 12:02 AM.
              loving girlfriend to 39 year old cancer survivor


              march 2010 R/T stage 1A seminoma
              surveillance
              march 2012 recurrence, right inguinal lymph node 3cm
              stage 2B seminoma
              april 2012 BEPx3
              august 2012 cancer free

              Comment


              • #22
                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
                Cook/Maid/Chauffeur/ATM Machine/Personal Asst. to Austin

                12/07/11 I/O AFP: 291 hCG: 151
                12/08/11 CT Scan, Xrays - clear
                12/15/11 Non Seminoma Stage1-B
                EC, Teratoma, Yolk Sac, Intratubular
                4/21/12 Relapse- Start 3XBEP
                6/25/12 Finished BEP
                7/02/12 Markers and CT Scan normal
                10/3/12 3 month post-chemo check-up - All Clear!
                2/28/13 8 month post-chemo check-up - All Clear!
                6/30/13 ONE YEAR- ALL CLEAR!!
                2/14/14 20 month post-chemo check-up - All Clear!

                Comment


                • #23
                  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!

                  Originally posted by AustinsMom View Post
                  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
                  Tracy
                  Cancer pharmacologist, caregiver blog here

                  Wife to Kel, dx 12/30/11 Stage IIIc (poor) embyronal, AFP 13700, 10x11 cm retroperitoneal mass, 1 cm^2 lung met
                  Left I/O 12/31/10.
                  4xBEP 1-4/11, AFP=22, 5*7 RP mass, tx failed
                  1.5 x VeIP 5-6/11; tx failed, AFP/b-hCG rising
                  Salvage RPLND @Indy 6/29/11, metastatic mixed germ cell tumor with yolk sac, seminoma and teratoma
                  Remission! AFP steady since 9/2011; 2+ years ALL CLEAR

                  Comment


                  • #24
                    Originally posted by AustinsMom View Post
                    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
                    Jan, 1975: Right I/O, followed by RPLND
                    Dec, 2009: Left I/O, followed by 3xBEP

                    Comment


                    • #25
                      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,
                      Kat
                      sigpic_______________________________________________
                      Caregiver
                      DX 5/15/09
                      Left orchiectomy 5/22/09
                      60% embryonal, 40% seminoma, w/ VI, LI, T2 (CS-IB)
                      CTs clear, X-rays clear, blood markers normal
                      L-RPLND 7/14/09, San Antonio
                      3 nodes positive, 100% embryonal, N1 (PS-IIA)
                      2 rounds BEP August 24, 2009, Austin
                      Enlarged lymph nodes Oct 09, Dec 09, Jan 10, Apr 10
                      All clear 10/01/10

                      Comment


                      • #26
                        Originally posted by River Blue View Post
                        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.

                        Originally posted by River Blue View Post
                        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

                        Originally posted by River Blue View Post
                        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.

                        Originally posted by River Blue View Post
                        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
                        Last edited by Davepet; 04-17-12, 02:25 AM.
                        Jan, 1975: Right I/O, followed by RPLND
                        Dec, 2009: Left I/O, followed by 3xBEP

                        Comment


                        • #27
                          Originally posted by Kat View Post
                          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.
                          Jan, 1975: Right I/O, followed by RPLND
                          Dec, 2009: Left I/O, followed by 3xBEP

                          Comment


                          • #28
                            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.

                            Comment


                            • #29
                              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
                              Cook/Maid/Chauffeur/ATM Machine/Personal Asst. to Austin

                              12/07/11 I/O AFP: 291 hCG: 151
                              12/08/11 CT Scan, Xrays - clear
                              12/15/11 Non Seminoma Stage1-B
                              EC, Teratoma, Yolk Sac, Intratubular
                              4/21/12 Relapse- Start 3XBEP
                              6/25/12 Finished BEP
                              7/02/12 Markers and CT Scan normal
                              10/3/12 3 month post-chemo check-up - All Clear!
                              2/28/13 8 month post-chemo check-up - All Clear!
                              6/30/13 ONE YEAR- ALL CLEAR!!
                              2/14/14 20 month post-chemo check-up - All Clear!

                              Comment


                              • #30
                                Originally posted by AustinsMom View Post
                                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..

                                Originally posted by AustinsMom View Post
                                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
                                Jan, 1975: Right I/O, followed by RPLND
                                Dec, 2009: Left I/O, followed by 3xBEP

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