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How do I prepare to support boyfriend going through chemo?

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  • #31
    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."
    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


    • #32
      As I sit here.....

      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!

      Comment


      • #33
        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
        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


        • #34
          Oops, Diane I accidentally hijacked d'smom "son diagnosed" thread and responded to you there.
          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


          • #35
            Originally posted by CW406 View Post
            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.
            Heidi

            Husband - age 51
            10/20/10 - Primary mediastinal seminoma - 10 x 9.3 cm; Ŗ-HCG = 33 (<2.6); AFP = 3.5 (<9); LDH = 274 (100-200 )
            11/1/10 4X BEP
            12/7/10 End Cycle 2 - Ŗ-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


            • #36
              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?

              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.
              Heidi

              Husband - age 51
              10/20/10 - Primary mediastinal seminoma - 10 x 9.3 cm; Ŗ-HCG = 33 (<2.6); AFP = 3.5 (<9); LDH = 274 (100-200 )
              11/1/10 4X BEP
              12/7/10 End Cycle 2 - Ŗ-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


              • #37
                day ten check in

                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.
                Last edited by River Blue; 04-25-12, 04:54 PM. Reason: addition
                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


                • #38
                  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!
                  Kick testicular cancer in the balls
                  9/2010 Pure Embryonal Carcinoma
                  10/2010 right orchiectomy
                  6/2011 HCG up to 300 6/27/2011 3XBEP
                  7/2011 HCG up to 1500
                  8/2011 HCG down to 6
                  8/25/2011 mass in abdomen
                  9/23/2011 RPLND
                  11/2011 HCG up to 37 masses in lungs and lymphnodes 11/2011 1X TIP
                  12/2011 HCG up to 400
                  12/2011-1/2012 2x HDC carbo/etopiside with Dr. Einhorn 3/2012-5/29/2012 50mg oral etopiside
                  1/2012-present HCG >0.5

                  Comment


                  • #39
                    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
                    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


                    • #40
                      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
                      Jan, 1975: Right I/O, followed by RPLND
                      Dec, 2009: Left I/O, followed by 3xBEP

                      Comment


                      • #41
                        Thanks, Zbot! I canít 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. Iím glad Austin is doing fairly well. We hadnít 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, weíre 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 Ė ha! Funny name. It was scary, but chills and fevers pass. But Iím 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 heís been eating well since. Is Austin feeling better and having more of an appetite post day 4?

                        Dave: Iím sorry that youíre one of the people whose ear ringing didnít leave with the chemo. Itís reassuring to know that it doesnít bother you too badly, and Iíll try to stop bringing it up so you donítí 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!!!
                        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


                        • #42
                          Originally posted by River Blue View Post
                          Dave: Iím sorry that youíre one of the people whose ear ringing didnít leave with the chemo. Itís reassuring to know that it doesnít bother you too badly, and Iíll try to stop bringing it up so you donítí 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.
                          Jan, 1975: Right I/O, followed by RPLND
                          Dec, 2009: Left I/O, followed by 3xBEP

                          Comment


                          • #43
                            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.
                            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


                            • #44
                              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
                              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


                              • #45
                                Originally posted by AustinsMom View Post
                                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.

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

                                Comment

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