debshephard's Journey:

Spouse/Partner: Testicular Cancer > Non-Seminoma > Choriocarcinoma

Patient Info: Finished active treatment less than 5 years ago, Diagnosed: over 4 years ago, Male, Age: 51, Stage III

  1. 1
    about 4 years ago
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    Waiting for test results and not knowing what the future would hold.

    Oh No

    The doctor first diagnosed large bilateral lung masses- had not idea at that time that it had started in the left testicle. Went through CT scans of chest and abdomen, lots of bloodwork. Finally showed an increased HCG level which suggested testicular cancer. For two weeks we lived with great uncertainty. Even so, more tests and then surgery had to be done.

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  2. 2
    about 4 years ago
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    Removal of testicle

    Procedure or Surgery

    March 1st he underwent surgery to remove the left testicle. They did a "radical procedure" where they take the spermatic cord right to the inguinal ring. The incision was along the "bikini line" and while it was uncomfortable afterwards, healing progressed well. Prior to this (Feb 22nd) he underwent a lung biopsy which was pretty routine. They did it with a local because he had to be awake during the procedure due to CT-guided needle (they told him when to breathe, etc.) These procedures provided the vital information needed for planning chemotherapy. The biopsy of the testicle was consistent with a "pure seminoma" while the right lung biopsy showed a "metastatic germ cell tumor/choriocarcinoma with lung necrosis. The oncologist disputes the testicular biopsy at this time, saying the tumor isn't "behaving" like a seminoma, especially when the HCG value actually increased approximately 2 weeks post orchiectomy. However, the oncologist says that these tumors usually respond well to the treatment (chemo) and often the lung tumors shrink rapidly. Our family doctor says 70-80% success rate (but we hope it's better than that !) We were told additional surgery may be needed when chemo is done to "clean up the lungs", but this seems well into the future.

    Went as Expected: Agree
    Minimal Recovery: Neutral/NA
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Disagree
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  3. 3
    about 4 years ago
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    Implant chemotherapy port

    Procedure or Surgery

    The surgery was done as an outpatient procedure with a general anesthetic. My husband reported some discomfort afterwards in the area of the port (left side of his chest) and the left side of his neck. The surgeon was experienced and we felt like Larry was in good hands. They taped up the area with steri-strips so that he was able to begin his first round of chemotherapy 4 days later. The only "dicey" part about the procedure was that Larry coughed several times during the procedure and the surgeon had to take extra care. Thankfully the outcome was good ! They take a post-op X-ray to make sure the port is positioned properly.

    Went as Expected: Agree
    Minimal Recovery: Neutral/NA
    Minimal Side Effects: Neutral/NA
    Minimal Impact to Daily Life: Disagree
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  4. 4
    about 4 years ago
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    Chemotherapy

    Drug or Chemo Therapy

    After my husband "passed" his pulmonary function test he completed his first full (5-day) week of intense chemotherapy beginning on March 18th. It will involve a 12 week cycle. Every 3 weeks he will have a full 5 days of VP-16 (etoposide) and cisplatin, with bleomycin once a week for the full course (all intravenous meds). He did fairly well during that first week (the nausea was pretty well controlled by the injectable meds, but a couple days after finishing he began to vomit and feel "bloated" with an uncomfortable feeling in his abdomen. The main side effects throughout the past week of chemo was extreme tiredness and lethargy- all he wanted to do was sleep. The nurses told him to drink 8 cups of water a day to "spare his kidneys". Now, 4 days later he looks the most alert he has in a week (he even went out with me for Chinese food- ate a little of his favorite General Tau Chicken !). Prior to this he ate onlyl small amts of bland foods. He didn't know that he could take the Zofran along with the compazine to help with the nausea. So we will try this in the future! Today we were thankful that he survived his first week of chemo and for all the support and prayers of our friends and family (it really helps).

    Easy to Do: Strongly Disagree
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Strongly Disagree
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  5. 5
    about 4 years ago
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    Visit with Oncologist after first week of chemo

    Milestones

    Today we had a follow-up visit with the oncologist and a CBC. We were happy to see that the blood levels were good (actually the anemia had improved since the pre-treatment bloodwork) and that some of the troublesome symptoms of the lung tumors have become much less. The doctor says it's a good sign that 1) Larry is not smelling the burning smell (he has been smelling on and off for the past several months) now absent since the first couple days of chemotherapy 2) the nipples are not tender any more- caused by the hormonal (HCG) influence of the tumor 3) he is not coughing badly like he did before chemotherapy. The doctor says the lung tumors often have a good response early in the therapy (by shrinking). He says it takes a month to know if HCG is going to go down. In a month he plans to re-test the HCG and the alfa Fetal Protein levels as a level of progress. So far, so good! I notice a definite difference myself as Larry is sleeping quietly at night now, so that I sometimes wonder if he is still there ! What a relief (we really haven't been sleeping well for the past 2 months!!)

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  6. 6
    about 4 years ago
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    Other

    Oh No

    Well, like the oncologist told us, my husband's hair is starting to fall out (going on the third week now after his first full week of chemo). He says his beard hair and the hair on his head can be pulled out in small tufts. The arm hair seems fine. No matter how we try to rationalize it- it is a little un-nerving. I have stocked up on caps and hats for him and told him his nickname will be "Mr Clean" :) Next round of chemo (full week again) will be next week. Wish him luck! Going in with him tomorrow for the Bleomycin again (which he gets every Tuesday for the full 12 wks)- no break from that!

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  7. 7
    about 4 years ago
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    Chemotherapy

    Drug or Chemo Therapy

    Just finished "Round Two" of the week-long intense chemo (2 more rounds to go). All my husband wants to do is sleep. The nausea and bloating did not seem as bad at his first full week of chemo. He is more aware of how and what he should eat and what medications to take for better nausea control. The main side effect that he complains of is a terrible "post nasal" drainage where he gets a chemical taste that nauseates him. So far his blood levels have been acceptable and we find out the blood results (fetal protein levels and HCG) next week, along with the followup X-rays they took of the tumors in his lungs.

    Easy to Do: Strongly Disagree
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Strongly Disagree
    5 Comments
  8. 8
    about 4 years ago
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    Cancer is shrinking

    Celebration

    Well, we met with the oncologist yesterday (Larry has reached his chemo "half-way mark" of the intense 12 wk course) and the doctor says the results of the follow-up HCG and fetal protein levels have dramatically decreased with the treatment. The lesions in the lungs have also been shrinking (we don't know to what extent) but the results have been positive. We asked the Dr if Larry would have to go through the RPLND and he was evasive- he says that because of the stage of the cancer (tumors in the lungs) he would most likely have to undergo lung surgery first to "clean up the lungs" after the 12 wks are over. Guess they have to "pick and choose" their surgical procedures based on priority. So, we are cautiously optimistic. At least Larry is in good spirits, not in pain, and is breathing easier.

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  9. 9
    about 4 years ago
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    Chemotherapy

    Drug or Chemo Therapy

    My husband has completed week 8 of the "intense" 12 week course; now he has two weeks off before his last full week chemotherapy. He says that the side effects seem worse with each subsequent "intense week" of therapy. He will be glad when it is over (the nausea and "blah" feeling). Today he is feeling a little better (they gave him Decadron and Zofran with his Bleomycin today) and he was able to eat (and keep down) Chinese food. After his last week (week 12) the oncologist says they will "re-stage him" which means they will re-take the CT scans of the lungs (abdomen too?) and possibly a PET Scan that will note any "active" tumor activity. He will almost certainly need lung surgery to remove any masses that remain. Today they took more blood to test the hormone levels (alpha fetal protein and HCG) and chems/cbc. So far things seems to be moving in the right direction.

    Easy to Do: Disagree
    Minimal Side Effects: Strongly Disagree
    Minimal Impact to Daily Life: Strongly Disagree
    2 Comments
  10. 10
    about 4 years ago
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    "Failed" pulmonary function test

    Oh No

    The doctor says that since the "Diffusion Capacity" on the pulmonary function test dropped (ie lungs are stiffer) that my husband will most likely have to skip his last 3 Bleomycin treatments (at least until he consults with a Pulmonary Specialist.) For now, Bleo is on hold (as it causes fibrosis in the lungs). The good news is that the Alfa fetal protein levels have dropped to normal, and the HCG level is WAY down (now it's 294- the goal is 0-3). This is a far cry from 46,904 (when he was first diagnosed this past February !

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  11. 11
    almost 4 years ago
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    weakness, short of breath, nausea

    Side Effects

    My husband finished the last full week of "intense" chemo (that completes the four "cycles" of the 12 week course. He is feeling worse now than ever- mostly due to the side effects of the chemo. He is so fatigued and "out of breath" that he couldn't even prepare a salad without having to sit down. For the first time I had to drive him for his Nulasta injection today. He says that when he stands up there is a "wave" of weakness that comes over him and he is out of breath and his legs feel like rubber. Usually after the chemo week he "rebounds" more. The nausea was very bad this morning but due to the meds (Zofran and Compazine) it is bearable. Thank goodness he sees the Pulmonary Specialist Thursday for his assessment.

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  12. 12
    almost 4 years ago
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    Terrible skin reaction- itching/hives all over body

    Side Effects

    Well, just when my husband seemed to be recovering somewhat from the prolonged effects of the last chemo treatment (2 wks ago), he starts to get a series of blisters in his armpits and groin and breaks out in a rash/hives that spread all over his body that warranted a trip to the emergency room. The oncologist denies that chemo had anything to do with it. The family doctor has no idea what caused it, but it didn't seem to respond until the 4th day on a decreasing dose of Prednisone and the addition of Claritin to his Benadryl/Pepcid regimen. Here it is almost a week later and some remnants of the rash and itching remain, but improved. One nurse remarked that maybe this was due to not getting the steroids he would normally get with the chemo now that the cycle is over. We have no idea what caused this, as nothing has changed in the environment or diet.

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  13. 13
    almost 4 years ago
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    Past 3 days he is feeling better than he has in the past 4-6 months!

    Celebration

    After going through a rough time through his illness, and surgery; then the months of chemo and most recently a week of terrible itching, hives and lethargy, things have finally settled down to where my husband seems happier, more optimistic and able to participate in "life" again. Not that he plans to run a marathon, but he was able to go out to coffee with the "guys", enjoy cooking a pasta salad and able to visit cousins camping on Father's Day (which meant so much to him!). It's all about the "baby steps". We should enjoy it now while we can- next week he goes for more CT scans and will get "re-staged" so that surgery can be scheduled possibly early August. At least the doctor hasn't absolutely ruled out or Alaska trip scheduled for late July.... Guess it teaches us to "live life in the moment" and enjoy those good moments while we can...

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  14. 14
    almost 4 years ago
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    Hair is back

    Celebration

    It is a small milestone but today my husband was able to use shampoo for the first time in over 3 mos. The hair is growing back velvety soft and is approx 1cm long. This put a smile on his face (and mine too !) :) It's funny that the beard grew in faster than the hair on his head...

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  15. 15
    over 3 years ago
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    Finished treatment

    Celebration

    Well, here it is 7 mos after the last round of chemo and my husband is feeling pretty good- back to his usual activities. The HcG levels were 8 at last count (goal, as I understand is 0-3). The only annoying side effects are tingling in the hands and feet (from the chemo) and numbness. He is taking Gabapentin daily and is unsure if it really is helping but at least things seem to have stabilized. We are very thankful for the progress and for another Christmas together.

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  16. 16
    over 3 years ago
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    Lung Surgery

    Other Care

    I forgot to mention that that after consulting with the testicular cancer "specialist" in Indiana, our oncologist concluded that he did not recommend lung surgery at this time as the complications would be too great. Supposedly the goal is that the remaining tumors would become an "empty shell" and not active. As the clinical signs (coughing, pain in the lungs) have resolved the doctor chose just to take rads every month or so. At this time he plans to follow up with CT Scans every 6 mos.

    1 Comment
  17. 17
    over 3 years ago
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    The doctor called and said that the HCG levels are 2 (normal!)

    Celebration

    This occurred approximately one year after the diagnosis and approx 9 mos after chemo ended. The question is- how long will this last if we do not do lung surgery for the mets?

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  18. 18
    about 3 years ago
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    Remission

    Celebration

    Here we are, over a year later since diagnosis, and the cancer markers are in the normal range. Instead of every 6 wks for a check-up and chest rads, the oncologist says he can go every 8 weeks. My husband is still feeling good except for the lingering numbness in hands and feet (he is coping). Once in a while he still gets itchy skin bumps on his hands, Dr says it is most likely from the Bleo- sun seems to activate it.

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  19. 19
    almost 3 years ago
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    Remission

    Celebration

    Dr. check-up today and we are still "in remission" according to the blood levels (HCG is "undetectable" and AFP is 5.4, normal is 0-13). No clinical signs of tumors in the lungs (i.e. coughing, etc.) although the "shells" of the tumors are still present and visible on X-ray. The doctor says we must still be vigilant, however. We are in a "surveillance mode" and will be for at least for the next 1-2 years.

    2 Comments
  20. 20
    over 1 year ago
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    Cancer is back/Recurred

    Oh No

    Has been two years without major issues.Well, this is hard for me to say this, but the CT scan now shows that the pre-existing tumors have enlarged and there is at least another new one (since the last scan 6 mos ago). My husband is scheduled to have a lung biopsy of 3 sites soon (as soon as the hospital calls). The doctor seems puzzled because all the tumor markers have been normal, along with normal Chems and CBC. It is very sad to see my once strong husband very weak and tired all the time now.When I am busy it's easier to deal with but in my heart I am very sad and don't want him to go through more suffering. I know I have to be strong for his sake but boy, will this be hard the second time around. They have already said that if a lobectomy is done he may lose 65% of his lung function.

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  21. 21
    over 1 year ago
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    Lung Biopsy (3 sites)

    Procedure or Surgery

    Underwent lung biopsy due to masses enlarging and Dr thinks there is a "new one".Lots of trouble breathing/coughing. Says we will have results in 48 hours, then a plan can be formulated.

    Went as Expected: Agree
    Minimal Recovery: Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Agree
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