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  • Our Story, looking for advice and support.

    Hi there,

    I'm new to the forums and have been lurking for a while. The amount of support I see on here is overwhelming, so I thought I would post my story too. I apologise but this will be a long post. My husband is 34 years old. He is getting treatment at Overlake Hospital in Bellevue (near Seattle) WA.

    I moved from Ireland to the U.S. on February 28th to marry my now husband. His bachelor party was the weekend before my arrival. It was a weekend away type of thing. Towards the end of the bachelor party he noticed that his left testicle was swilled really really big, but no pain. On the Monday after the swelling has still not gone down and I urged him to go to the doctor. He sent him straight to the hospital for an ultrasound. The urologist took a quick look and immediately suspected a tumour. The orchiectomy was completed the next day. A few days later I arrived in the U.S.

    We got the pathology back a week or two later. It was cancerous. Seminoma. There were no blood markers though. Just one thing was marginally off, but not enough to cause any concern. The docs said that all be would need is some radiation in that area and then we would be good to go.

    We got married the following week.

    Then we went for the CT scans. They found a just under 5cm mass in a lymph node beside the kidney and a major vein. This was not biopsied. He had a power port placed on his right chest a few days later.

    He's been so strong. The diagnosis hasn't really gotten him down or depressed at all. He is more angry or annoyed about it. He always does have a very cool outlook on things. He os a very good communicator though so I fully believe that mentally he is doing well. I'm definitely the one that is more emotionally effected by it. I'm anxious and freaking out all the time.

    The following week we started chemo. Cisplatin and Etoposide for 4 cycles.

    It's been hard. The chemo has really been tough for him. During the first cycle there was a lot of pressure in his head, stomach and bowels. Headaches. Tiredness. In the recovery weeks he hit a fever several times. They decided to give him Neulasta shots after every cycle to boost white blood cell production but didn't tell us about taking calritin in advance.

    The second cycle itself was actually a little better. However on the second last day of it my husband had really bad neck pain on the left side (not the side of the port). After lots of testing an ultrasound revealed a really large clot in the main artery. It was large and chronic (so not a very new thing) but not completely obstructing. Now I inject my husband twice a day with lovenox (anti-coagulant) shots. The flowing Monday we got the Nulasta shot. We thought everything was going okay. Some nausea, weakness and headaches. But not the worst. But that Friday night my husband had the most excruciating bone pain. He was twitching and writhing in pain. We had no idea what the cause was. We had to call the on call doc. They explained it was likely the Nulasta shot. After several strong pain meds and a few days later the pain went away. From that point on My husband is taking Claritin daily.

    I believe his hair, nose hair, body hair, eye lashes and all began to fall out at this stage.

    The third cycle whiped my husband out. No energy. No strength. Super strong nausea, but no vomiting yet. We got home that weekend. He wanted to shower and when he got out he asked me for help, he was feeling dizzy. I helped him out of the shower and thank god I was holding on to him, he collapsed. It was a fainting seizure type thing where he stopped breathing, his eyes were wide open but not responding. I'm not sure how long it lasted, probably half a minute at most, I was shouting at him to wake up, eventually he threw up and immediately was alert and normal. But he didn't know what had happened. I drive him straight to the ER, and the same thing happened again in the lobby. They did loads and loads and loads of testing. The next day they ruled out brain toumor, seizures, epilepsy. They put it down to low blood pressure and a Vasovagal fainting episode. I think that has scarred me the most. I thought he had died for a split second.

    The fourth and last cycle was bad too. The nausea got stronger and my husband was throwing up. He was very weak, going to the bathroom and back would whipe him out. Or just a few stairs. But the vomiting was the worst. We have 5 anti nausea meds, none seemed to relive him. This continued for a few days after the last cycle. The last chemo day was the 10th of June. So about a week ago. He is only improving slightly. He vomits only every other day now. The nausea is mostly gone. The main issue is the weakness. He is so weak. And his arms and legs have little strength.

    Does anyone know what the cause of this could be and how long until he should feel strength again?

    Overall he cannot work the days he has chemo and usually the week after he also needs to recover. The following week he can work a little and it's back to chemo again. Since the effects of the chemo have gotten worse from cycle to cycle he has been able to do less and less.

    Our usual oncologist has been out of the office so we have had another one for the time being. So far everyone has said that this is very curable and always has been positive. No one had really been too negative. But this new oncologist said that soon we will see if the tumour has shrank or grown. She said it as if that both were equal chances, which freaked me out. No one had ever mentioned that possibility before. The point of the chemo was always curative. So I asked her to look into the statistics of the treatment and let me know the likely hoods of what outcomes we can expect. And she said she would and never got back to us. She has done that a few times with different things. What doctor does that?

    Our final scan to check what is going on with the mass in the abdomen is on Monday and we get the results on Tuesday. I can't sleep anymore. What is the chance that the tumour has grown? Is that unlikely? What is the likely result? And how likely is it?

    Since my husband that those fainting/seizure type episodes I haven't been able to sleep. Or think about anything else. All I do is watch him to make sure he doesn't fall, or stop breathing, or get sick. I worry all night about the cancer spreading, or him not recovering from chemo, or me getting ill. I usually don't fall asleep until 4 or 5 am. It's just never ending. Does it get better? Am I the only person who freaks out like this? I don't let him see this part of me a lot.

    If anyone has advice or support to offer for any of the questions I had it would be super appreciated.

    Nelly x

  • #2
    Hello Nelly,
    Sorry to hear your husband had such a rough time with chemo. My son didn't do well through his chemo cycles either. I understand how tough it is seeing the suffering and sickness and not being able to do anything more for them. He should slowly start to feel better and stronger now that he's done with his cycles. I do want to reassure you that TC is very curable. The waiting is always the worst part. I believe he has a much higher chance that the CTscan will show his tumor shrunk, then not. I know it's tough going through this with your loved one as a caretaker, but most likely there will be a "cure" at the end of the rainbow. Hang in there. It really does get better.
    9/6/13 Left I/O. 18 year old son diagnosed 9/13/13 Stage 2C. Path report: embryonal and yolk sac with spermatic cord involvement and lymphatic invasion BEP x 3 finished 11/25/13. PC-RPLND with Dr. Foster at IU on 1/21/14. Found only dead cancer! Surveillance as of 1/23/14. All clear as of 5/2017.

    Comment


    • #3
      Hi Nelly,
      Welcome to the forum, sorry you need to be here.Sounds like he's had it a bit on the rough side, some of us do. Most of his symptoms are quite normal, fatigue was bad for me, & I would have to sit down to catch my breath after just getting dressed. Most of us have the nausea well controlled by the meds these days, but a few do not.

      As far as the cause of the fatigue, low red count, nausea & the harsh chemicals he's endured are all factors.
      -
      It definitly gets worse with each cycle & it takes a bit loger to recover each time as well, that is normal. His nausea is already dissipating & that will help him regain some strength. It will take a few weeks but he'll be his old self eventually. It might take a bit longer for him since he's had such a rough time. Just don't doubt that he will get there, he will, as so many of us have.

      I think I'd fire that doc, yes, they do need to let you know there is always a chance the tumor didn't respond, but seminoma is *VERY* sensitive to this chemo regimen & while there may still be some tumor showing in the first scan, it will almost certainly be smaller & will continue to shrink. That is what mine did, it was undectable at my next scan.

      Has that blood clot resolved yet? I had one at the end of my port catheter that did not, they figure my body re-vascularized around it.

      Feel free to post back with any questions,

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

      Comment


      • #4
        Originally posted by Chemin View Post
        Hello Nelly,
        Sorry to hear your husband had such a rough time with chemo. My son didn't do well through his chemo cycles either. I understand how tough it is seeing the suffering and sickness and not being able to do anything more for them. He should slowly start to feel better and stronger now that he's done with his cycles. I do want to reassure you that TC is very curable. The waiting is always the worst part. I believe he has a much higher chance that the CTscan will show his tumor shrunk, then not. I know it's tough going through this with your loved one as a caretaker, but most likely there will be a "cure" at the end of the rainbow. Hang in there. It really does get better.

        Thank you so much for the encouragement. He is slowly getting better. Its just so slow that sometimes I wonder if there is a change at all. But even if I look back to last week, he has come along a lot since then.

        Comment


        • #5
          Originally posted by Davepet View Post
          Hi Nelly,
          Welcome to the forum, sorry you need to be here.Sounds like he's had it a bit on the rough side, some of us do. Most of his symptoms are quite normal, fatigue was bad for me, & I would have to sit down to catch my breath after just getting dressed. Most of us have the nausea well controlled by the meds these days, but a few do not.

          As far as the cause of the fatigue, low red count, nausea & the harsh chemicals he's endured are all factors.
          -
          It definitly gets worse with each cycle & it takes a bit loger to recover each time as well, that is normal. His nausea is already dissipating & that will help him regain some strength. It will take a few weeks but he'll be his old self eventually. It might take a bit longer for him since he's had such a rough time. Just don't doubt that he will get there, he will, as so many of us have.

          I think I'd fire that doc, yes, they do need to let you know there is always a chance the tumor didn't respond, but seminoma is *VERY* sensitive to this chemo regimen & while there may still be some tumor showing in the first scan, it will almost certainly be smaller & will continue to shrink. That is what mine did, it was undectable at my next scan.

          Has that blood clot resolved yet? I had one at the end of my port catheter that did not, they figure my body re-vascularized around it.

          Feel free to post back with any questions,

          Dave
          Hi Dave,

          I am sorry that you also had to go through TC, it must not have been easy but I am glad to hear that things are looking good now.

          I am glad to hear that what my husband is going through is pretty normal. I haven't had anything to compare it to. The doc had said, before we began treatment, that it would be relatively easy and not get in the way of life that much. That has unfortunately not been the case, so I was worried we were alone with this. I am glad to hear that we are not alone, I mean, I am sorry that others are the same, but I am glad we are not some weird case. Thank you sooo much for reassuring me about his energy levels, it had me pretty worried. Do you feel that you are mostly recovered now? How long did it take you to feel somewhat functioning again?

          Do you know what happens if the tumor has shrank but is still there? Is there a chance we need chemo again? Or do they just wait and do more scans? I mean, does it continue to shrink even without further chemo?

          We do not know what state the blood clot is at now. We discovered it over a month ago and have been doing the twice a day injections ever since. The doc wanted us to continue with that until chemo was over and then revisit it to see how the injections worked. So I guess we can start talking to the doc about that on Tuesday when we see him about results.

          I really appreciate all the insight you have given me. Its more that I've had throughout the whole process.

          Nelly

          Comment


          • #6
            Hi Nelly
            Tumours _tend_ to shrink during chemo, but sometimes take a long time to reduce/go completely. My scan post chemo had my tumour still above the 1cm limit, though it had shrunk. So we opted to wait until my next scan to see if we need to do anything else. By that scan it had gone. But there are differences between countries, here in the UK they prefer not to perform surgery (RPLND) if they don't need to but in the US RPLND option is more common.

            Fatigue and chemo "illness" is very very common. I didn't have many side effects and, according to my hospital notes, was very chemo tolerant - but I (personally) felt really unwell for a "good" portion of my nine weeks treatment. And it probably took my about 6 months to be what I would call fit and healthy again. But you do/he should get better again and one day this will all be a memory for you both...

            DZ

            Jan 2009: RHS (Seminoma) & RT
            Mar 2010: LHS (Embryonal Carcinoma)
            Sep 2010: Relapse & 3 x BEP
            Mar 2015: Five years "nut free"
            http://doublezeroami.blogspot.com

            Comment


            • #7
              Thank you for that info DZ, it helped a lot today!

              Today we went back to the hospital for the CT scans to check how progress was going. We also went down to Oncology to let them know how weak Derek (my husband) was feeling and to get some bloods drawn to make sure everything was okay.

              After the scans we went back to Oncology. Apparently Dereks' hemoglobin was kind of low, 7.9. They offered us a blood transfusion tomorrow which we are going to go for. It should help him with the weakness he was experiencing.

              BUT most exciting of all...

              Our oncologist came to see us. He looked at our scans and confirmed that the mass has gone from just under 5 cm to under 2 cm!! That means we are now in the monitoring/surveillance stage as he put it! I am sooooo glad. Dereks been very nauseas today so he has not yet been able to enjoy the news yet.

              So what does this mean? Is he cured? Or are we waiting on something further to happen?

              Thank you all so much, you have really gotten me through the last few days.

              Nelly x

              Comment


              • #8
                Congrats on the tumor shrinkage! While we can't say he is cured just yet, the odds are *very* good that he is. The tumors tend to continue shrinking after chemo ends. Basically, the tumor is dead, it just takes the body some time to resorb the tissue.

                The low hemoglobin can certainly explain the fatigue. Our cells need oxygen to work properly & hemoglobin transports that so a low level could certainly be the culprit. While it will likely rise up eventually, sometimes it's best to get the transfusion to jump start the process & relive symptoms.

                I'd say this is all positive news & Derek is on the road to recovery, please continue to keep us posted as he progresses.

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

                Comment


                • #9
                  Awesome news on the shrinkage! As some of the others have said, yes the tumors can continue to shrink even after chemo. Something I did want to mention is that after about a month of being done with chemo I began to feel much better so it won't take your husband a terribly long time to start feeling better. The body starts healing itself up pretty fast after chemo is done.

                  Also, I would look into maybe talking to someone about what's going on. I know you said you were having a hard time with this. Most of it being anxiety. I too have terrible anxiety. I see a psychiatrist and have taken medication before which has helped. Just wanted to mention that because I know how terrible losing sleep over worrying can be. And just worrying in general. If you have any questions feel free to message me or just post them on here. Cheers
                  3/11/14 - Right orchiectomy
                  non seminoma - stage IIC 100% embroyal carcinoma
                  2 enlarged lymph nodes
                  3/31/14-5/27/14 - BEPx3
                  lymph nodes decrease in size but still about 3 cm each
                  7/16/14 - RPLND - found only dead cancer

                  Comment


                  • #10
                    Hi Nelly,

                    With seminoma a mass less than 3 cm after chemotherapy is a great sign and watching to make sure it doesn't change is normal. Seminoma especially can cause a lot of fibrotic changes during chemotherapy and that may be why it is still at 2 cm and I would be confident that the chemotherapy was curative. However, you are going to want to make sure he keeps his follow up appointments to keep an eye on things.

                    If for some reason there are changes and more treatment decisions need to be made than I would check with Dr. Nichols who is in Seattle to get a second opinion as he is a leading testicular cancer expert and right in your area. His information is available at http://tcrc.acor.org/experts.html#seattle and it is always good to have someone like this in your corner should you need it in the future. All in all I think things sound great with the chemotherapy response.

                    With the hemoglobin at 7.9 was this a rapid drop? How long ago did chemotherapy end? Is he still getting Lovenox? If the drop was rather rapid and it has been weeks since chemo ended and he is still on Lovenox then sis they look for signs of possible bleeding (due to the lovenox)?

                    Mike

                    Oct. 2005 felt lump but waited over 7 months.
                    06.15.06 "You have Cancer"
                    06.26.06 Left I/O
                    06.29.06 Personal Cancer Diagnosis Date: Got my own pathology report from medical records.
                    06.30.06 It's Official - Stage I Seminoma
                    Surveillance...
                    Founded the Testicular Cancer Society
                    6.29.13 Summited Mt. Kilimanjaro for 7th Cancerversary

                    Comment


                    • #11
                      Originally posted by Daniel335 View Post
                      Awesome news on the shrinkage! As some of the others have said, yes the tumors can continue to shrink even after chemo. Something I did want to mention is that after about a month of being done with chemo I began to feel much better so it won't take your husband a terribly long time to start feeling better. The body starts healing itself up pretty fast after chemo is done.

                      Also, I would look into maybe talking to someone about what's going on. I know you said you were having a hard time with this. Most of it being anxiety. I too have terrible anxiety. I see a psychiatrist and have taken medication before which has helped. Just wanted to mention that because I know how terrible losing sleep over worrying can be. And just worrying in general. If you have any questions feel free to message me or just post them on here. Cheers

                      Thank you for all the advice. We are having another scan in about 2.5 months to check the status.

                      The drop was gradual, three weeks before that it was 11 and a little higher three weeks before that. It steadily dropped throughout treatment. Derek is certainly not as weak now which is great. He is still getting Lovenox.

                      Now the main issue is still nausea and vomiting. Its still happening daily. We have Ondancetron and Prchoperazine amongst other drugs, but they dont really seem to be helping with the nausea. We are hoping it will pass soon, its been going since the end of the second last round of chemo he had. On and off.

                      Comment


                      • #12
                        Originally posted by nellybelle View Post
                        Now the main issue is still nausea and vomiting. Its still happening daily. We have Ondancetron and Prchoperazine amongst other drugs, but they dont really seem to be helping with the nausea. We are hoping it will pass soon, its been going since the end of the second last round of chemo he had. On and off.
                        That is highly unusual, what does his doc say about the nausea?
                        Jan, 1975: Right I/O, followed by RPLND
                        Dec, 2009: Left I/O, followed by 3xBEP

                        Comment


                        • #13
                          Yeah, its really frustrating. Derek has been out of work for like 3 weeks now and it keeps continuing. We told the docs about it and they basically just said that now that chemo is done the nausea and vomiting should pass eventually.

                          Comment


                          • #14
                            Well. honestly, I cannot recall anyone else on the forum who mentioned having nausea a week & a half after the last chemo infusion. I think his docs may need to take this a bit more seriously. Also, it might make sense to stop the meds & see if he improves. How is his appetite?

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

                            Comment


                            • #15
                              Thats interesting. We never thought that it might not be normal, because they didn't fuss about it. His appetite is still good, he gets plenty of food and water. He doesn't get sick after he eats which is helpful. Today is the first day where he has tried not to take the meds. He's nauseas but okay. The last two days he's managed not to vomit all day, but get sick in the evenings. We will see how the next few days go.

                              One of the other things bugging him is tingling in his hands and feet sometimes, and face. I think thats neuropathy. What seems to have come with that is that his hands and feet fall asleep A LOT, he says it feels like bad circulation. He often feels his hands tense up so he has to spend a minute or so opening and closing his hand repeatedly to get it back to normal.

                              Also, thank you all sooooo much for commenting here. Its seriously been invaluable.

                              Comment

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