No announcement yet.

Words of wisdom?

  • Filter
  • Time
  • Show
Clear All
new posts

  • Words of wisdom?

    The news is this...the ugly monster has reared it's head. I completely understand all the posts regarding pure seminoma cancer and how it is difficult to kill. Larry was diagnosed Jan 2005 with pure seminoma, his symptom..."back pain".
    His current treatment is Taxol and Gemzar, well basically Gemzar. The Taxol isn't cooperating. I've asked about Avastin (thank you so much for the advice). His blood counts are too low and he continues to have Arinesp shots. If the chemo is too powerful and is killing his good cells that would indicate it is killing the bad cells as well, right? If they stop that part of the chemo, does that mean the cancer cells are not being killed? He should be halfway through his second cycle. He had one treatment, shot the next week, reduced amount of Taxol following week, eliminated Taxol last week and is scheduled for a shot this Friday.
    The "Seminoma" cancer was metastisized when it was discovered. 3X BEP 1/05-3/05, 2X VeIP 9/05 Tandem transplant 12/05 all clear 2006, elevated tumor markers 3/9/07, scan confirmed baseball sized tumor in liver and golf ball to tennis ball sized tumor at the head of his pancreas. Old spots in his lungs are unchanged; however, new spots are evident. Second lobe of liver has numerous "spots".
    Does anyone have any advice? Any new drugs, ideas, opinions, thoughts or anything?
    Thank you all,

  • #2
    I didn't go over your other post so you may have cover this. Are you in consultation with Sloan or IU. If not I would do that now.
    Son Jason diagnosed 4/30/04, stage III. Right I/O 4/30/04. Graduated College 5/13/04. 4XEP 6/7/04 - 8/13/04. Full open RPLND 10/13/04. All Clear since.

    Treated by Dr. Rakowski of Midland Park, NJ. Visited Sloan Kettering for protocol advice. RPLND done at Sloan Kettering.


    • #3
      Actually Larry went to see Dr Foster and Williams @ IU in the summer of 2005. They suggested surviellance and we did that until the next scan, it showed growth of the masses, that's when we started the VeIP (2X) it wasn't doing what it was supposed to so we went right for the HDC/BMT one in Nov 05 and the second in Dec 05. I have e-mailed Dr. Einhorn a few time in light of the new information and he suggests that we follow our Dr.s plan as he has been working with him on my husbands case.
      I don't want to wait for answers so I e-mail Dr. Einhorn again today to see if there was something else that he could take that wouldn't wipe out his blood counts.
      I feel so anxious to do SOMETHING and everyone else (medical profession) just seems to be "waiting to see". This is stressful. Thank goodness for this web site to bounce fears and thoughts off of.


      • #4
        Oh how I wish I could offer advice on this. I know you contacted Sloan and have been seen and consulted by IU. Are there any clinical trials IU or Sloan can get Larry into?
        What Larry and Mark (TCLEFT) are going through with seminoma hammers home that even the "best cancer to have" can turn into a monster.
        Sending prayers to you and Larry and hoping other here can guide you.
        Retired moderator. Husband, left I/O 16Dec2005, stage I seminoma with elevated b-HCG, no LVI, RTx15 (25Gy). All clear ever since.


        • #5
          Thank you Karen. I've looked up some clinical trials and thought we were in for one just a couple of weeks ago, then Dr. Einhorn discovered that Larry was on a treatment with Taxol and Gemzar and suggested we continue on with that for now. Well, for now it isn't working, that's why I e-mailed him today.
          If the chemo can't differentiate between good and bad cells, then how can it kill the cancer w/o killing his own cells? Generally your body regenerates it's own good cells; however, Larry's been through a lot in a short time and he isn't able to do that like most people, so...what now? How do you attack cancer agressively to kill it if it is going to destroy the good cells too? There must be something else we can do.
          My search for other options isn't going so well. I can't find much out there that goes beyond the HDC/BMT.


          • #6
            Larry is getting Arenesp (sp?) shots pretty regularly, it doesn't seem to be enough. Do you know of something else?
            I'll update all on a response from Dr. Einhorn @ IU. He has blood work every week but they are not doing tumor marker counts. Were you curious as to his white and red counts or the Tumor markers? They keep saying next week but I am going to make sure they do it this Friday. He is supposed to have a scan next week as well, we see the Dr. Friday 4/20 to go over the results of the scan. I'll post that following Monday as to the results.
            Just let me know what information will help in your research and I will get it from the Dr. They don't gleefully hand out test results, but I will get whatever I can. I just don't know what so much of it means that I don't ask, I wouldn't know what to ask for anyway.


            • #7
              I've been thinking about you and Larry and wondered how the scan Friday and talk with the doc today went. You are in my thoughts and prayers each and every day.
              Retired moderator. Husband, left I/O 16Dec2005, stage I seminoma with elevated b-HCG, no LVI, RTx15 (25Gy). All clear ever since.


              • #8
                No news from you for a while....are you guys OK? You and Larry have been in my thoughts and prayers.
                Retired moderator. Husband, left I/O 16Dec2005, stage I seminoma with elevated b-HCG, no LVI, RTx15 (25Gy). All clear ever since.


                • #9
                  I see you are online are you?
                  Retired moderator. Husband, left I/O 16Dec2005, stage I seminoma with elevated b-HCG, no LVI, RTx15 (25Gy). All clear ever since.


                  • #10
                    How did I miss this one?

                    Is Larry getting transfusions as well? What does his white count look like? Is he getting Neulasta as well as Aranesp? I think you may have called my wife when I was in pretty deep. Don't hesitate to call again. Shoot me a private message if you like, but contact me if you can.
                    I Love My Pack!



                    • #11
                      The most curable cancer?!?

                      I apologize for the delay in responding here. Things have been going rather rapidly. I have just a few minutes before I am on my way out the door to take Larry to the oncologist.
                      He just finished 8 days (16 treatments) or radiation and we are going to see what his blood work from yesterday reveals. Last Tuesday I had to rush Larry to the ER and he was admitted it took several hours and LOTS of powerful pain medication to get him to sleep. We left the next day. Larry is back to work now. The pain continues to increase and he continues to refuse the advice of his Dr. He did finally agree to allow someone from Hospice to come out to the house (His Dr. advised hospice twice, strongly the second time) tonight. I know he doesn't think he needs them, but I do. I don't have equipment to check his vitals or the knowledge to help him manage his pain very well. He refuses to stop working. His pain episode happened at work and I know they must be biting their nails wondering if it will happen again and when. Sometimes I think he is just being selfish. The Dr. told him he is affecting the quality of his life. I feel like he's taken my husband from me. This disease has taken over his body and mind. I see him loosing weight, I see him moving slower, I hear him say mean things and watch him becoming withdrawn. He doesn't communicate. It's like he's in his own world and he doesn't want anyone else in there. I don't know whether to go to him and try to comfort him, or to run from him and stay out of his way. This is horrible. If this is the end of his battle with cancer why would he want it to be like this? If it isn't why doesn't he want to accept help? I've recently learned hospice doesn't mean giving up. Some people can actually get better when hospice gets on board. Even if the cancer doesn't go away he can live a longer pain free life.
                      Well, I've got to run, I'm working on getting internet at my home and will try to do better at updating Larry's condition.


                      • #12
                        Gosh, I am reading these posts today and my heart is breaking. I am so so sorry about your husband, I hope he gets the help he needs and the two of you are able to re-connect soon.


                        Co-survivor with husband Boyce, Diagnosed 7-11-06, orchiectomy right testicle on 7-12-06- Stage 3A: Mixed germ cell tumor with inguinal seminomatous and kartotypic carcinoma. One tumor over 10 cm, second tumor 4 cm, Chemo 4xBEP: Bi-lateral RPLND Dec 2006, nerve sparing but left sterile.
                        Current DVT
                        Current testosterone replacement therapy, Testim.

                        "You must abandon the life you planned, to live the life that was meant for you" ~wisdom I have learned from my family on this forum


                        • #13
                          What do we say when we just dont know what to say?

                          I'm in no position to say how someone should behave when they are facing so much uncertainty. The effect it has on the one with cancer, and the effect that it has on loved ones can be devastating.

                          All I know for certain is that it's unfair, and I have a lot of other things that Id like to say about it, that I'm sure is best I keep to myself.

                          I pray for you both to find peace ..

                          Tammy & Anthony

                          Son Anthony DX 12/11/06
                          L/O 12/20/06 Stage IIIA, 95% EC, 5% Yolk Sac
                          4XEP 1/29-4/6/ 07
                          AFP started increasing3 wks later
                          Residual abdominal mass found on CT
                          RPLND 6/8/07
                          Cancer in pathology-
                          80% mature teratoma, 20% Yolk Sac. --
                          No adjuvent chemo and
                          AFP normalised

                          July 22, 2010 ---- 3 years all clear!


                          • #14
                            Patti, thinking of you and Larry...
                            *Hubby Andy diagnosed 02/13/07, Left IO 02/16/07 *Stage 1A Non-Seminoma (65% Immature Teratoma / 35% Embryonal Carcinoma) *RPLND 04/27/07 Lymph Nodes-ALL CLEAR
                            *Complications from Chylous Ascites so Laparotomy 05/03/07 *No food for 10 weeks, TPN only *07/18/07 Removed drains, tubes, picc line *CT Scan 07/31/07-ALL CLEAR
                            *CT Scan 02/12/08-ALL CLEAR *Hydrocele surgery 06/19/08 *CT Scan 9/30/08 and 03/06/09 shows <cm left lung nodule - under surveillance


                            • #15
                              This is so sad, as with the others words are difficult to find. Does Hospice have anything to support you, even if he doesn't want to go? Hospice people are wonderful people, maybe they would have some words of wisdom that would help. It is like a bird in flight with no where to land. Thank-you for your update, Sharon
                              Click here to support my LIVESTRONG Challenge with Team LOVEstrong.