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  • Salvage / 2nd Line chemo

    Well it lloks like I am going to have another 4 rounds of TIP chemo for my recurrence!!!!

    I have spoken to my oncologist yesterday and this is what he is recommending based on the Sloan protocol. I am getting a second opinion form Dana Farber next week.

    Does anybody have an personal experience with this regimen, I have spoken to my oncologist about side effects and it does not sound pretty, but would be interested to here if anybody had been through it.

    Thanks

  • #2
    Originally posted by David1969
    Well it lloks like I am going to have another 4 rounds of TIP chemo for my recurrence!!!!

    I have spoken to my oncologist yesterday and this is what he is recommending based on the Sloan protocol. I am getting a second opinion form Dana Farber next week.

    Does anybody have an personal experience with this regimen, I have spoken to my oncologist about side effects and it does not sound pretty, but would be interested to here if anybody had been through it.

    Thanks
    I had the TIP ~ 6 months after completing 4 EP. How long has it been since your last Chemo? It's hard for me to tell you that it's not going to be easy, but if your last Chemo was a while ago, it may not whallop you like it did me. As you know, Chemo is cumulative. I went into the TIP thinking I would be OK for the first and second cycle then start dealing with effects. Unfortunately, the first cycle of TIP felt like the 5th cycle and so on. You'll be in patient for the Taxol as that's a 24hr infusion. I went in on Sundays and was released to the Cancer Center Monday morning for the rest of the protocol. I continued the week out-patient but I did not/could not drive. Tell the Mrs. to keep everything "clean". Your blood counts are going to crash. I don't think there's anyway around that, but they'll manage it with Aranesp, Neulasta and transfusion. I ended up in the Hospital a couple of times due to infection. Once with ~104 temp. It's ~6 months post TIP and I'm just about back to being me again. I'm dealing with neuropathy, some intestinal issues, and I'm still a bit sensitive mid-back where one of the tumors were. Still, I'm active and starting to enjoy life again. This road sucks, but you'll make it through, and you can call on us whenever you need. Hang in Brother.
    Mark
    I Love My Pack!

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    • #3
      Crap and Bummer were the first words to come to mind ! So sorry that you have to have 4 rounds of TIP, but I say let's get rid of this TC once and for all!

      I know there are a few here that have experience with TIP so they can give you tips. My husband had 4 rounds of BEP and I am not sure what the differences are.

      I feel really good that the advice came from Sloan, I think they are just awesome. I will say prayers for your fast healing!

      Hugs,

      M.
      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

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      • #4
        Mark, I finished my 2 rounds of BEP in april, to be honest I handled it very well and apart from hair loss had almost no side effects. I just wondered how tought his round was going to be.

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        • #5
          Originally posted by David1969
          Mark, I finished my 2 rounds of BEP in april, to be honest I handled it very well and apart from hair loss had almost no side effects. I just wondered how tought his round was going to be.
          Hey again David. ~ 6 months out for you as well. Not sure how BEP to TIP is going to be, but I'd guess that since you're going from 2 cycles to 4 of TIP rather than 4 to 4, it might be OK for you. Don't be shy to ask for more anti-nausea meds and fluids. And if the anti-nausea meds stop working, change up right away. There's no reason to be more uncomfortable than you have to be. All I can tell you is that Chemo is cumulative, so pamper yourself right away. What I mean by that is don't wait for the symptoms to hit. Take the anti-nausea meds religiously. Get extra fluids. If you tolerate well, like it sounds you did with the BEP, you might just be sleeping a lot. I'm sure you'll do fine. Keep All of us posted as things occur. If I can think of anything else, I'll be sure to let you know. Good Luck Man!
          Mark
          I Love My Pack!

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          • #6
            Hey David,

            If anything, it's good to hear that you have settled on a course of treatment. I am very hopeful that the protocol you have chosen will help rid yourself of the beast. I don't know when you will be coming over to DFCI, but if you want, let me know and I can help you get your bearings here. The Longwood Medical Area is a mish-mash of hospitals and clinics, and it could be overwhelming to get around. If there's any way I can help, don't hesitate in contacting me. You know how to reach me.
            "Life moves pretty fast; if you don't stop and look around once in a while, you could miss it." -Ferris Bueller
            11.22.06 -Dx the day before Thanksgiving
            12.09.06 -Rt I/O; 100% seminoma, multifocal; Stage I-A; Surveillance; Six years out! I consider myself cured.

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            • #7
              My Son Les

              Hi David,

              My son also started TIP today. He was diagnosed with TC May 6, 2007. He finished his BEP 8 weeks ago. He was scheduled for surgery (RPLND, liver removal) next Friday. When they checked his tumor marker levels they had gone from 9 to 900. So surgery is postponed and he is scheduled for 4 cycles of TIP.

              Hope you do well.

              Pam
              Son Les diagnosed 5/7/07-Right I/0 5/9/07-Stage 3C Non-seminoma Mixed Cell Germ Tumor-Tumors in liver, lungs, lymph nodes, brain-4XBED Finished 7/31/07 HCG 9 tumors smaller, brain lesion gone-9/30/07 HCG 999-TIPx4 started 10/2/07, IU 11/29 Told he had Choriocarcinoma Syndrome HDC and Stem Cell Transplant to begin 1/3/08 Finished Transplant 3/1/08 HDC and Stem Cell Transplant Failure 3/20. 4/17 RPLND & Liver resection, Molecular profiling of tumor, 6/2 Hospice Services- Passed Away 12/12/08

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              • #8
                Pam,

                Thanks for the reply. Please let me knoe how your son gets on with the TIP regimen.

                Wish him all the best, I look forward to hearing how he is beating this terrible disease!!!!

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                • #9
                  Pam:
                  I'm sorry to hear about your son's problem. Where is he being treated? Do you have any information about his case you would like to share? If you want you can just vent, we're great listeners.
                  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.

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                  • #10
                    Venting Good

                    Thanks... My son is 22. He was diagnosed with Stage III Bulky Nonseminoma. He is being treated at Carolina Medical Center in Charlotte, NC. His cancer had spread to his retroperineal lymph nodes, liver, lungs, and brain. He went through 4 cycles of BEP with very little serious side effects. I think that he was so very very sick when diagnosed that the chemo made him feel better. He finished his chemo July 31. We then visited urologist to schedule his RPNLD and his two liver surgeons to schedule liver surgery. At this point they said they were going to watch the tumors in his lungs (15 or so) and "cherry pick" them as they grew. Well we went to see his oncologist and they did blood work. His hcg count had gone from 9 to 900. I got a call at school yesterday ( I teach 1st grade) and said chemo tomorrow 8am. Well needless to say I was shocked and unsure about what was going on. When I got there they told me. They are doing the TIP and then re-evaluate for surgery. Now here is the kicker now they are going after one of the nodes in his lungs after surgery below the diaphragm! I think part of our problems (well not really a problem) is that my son has a whole group of doctors. They are all the chiefs of the department they specialize in. They have brought my son to the tumor board of the hospital (which is a teaching hospital) 4 times. Sometimes there are two many hands in the pot and they forget to tell me things!
                    My son is being brave. I think he often pretends. He doesnt want to know details. Sometimes he just lays down when the doctor is talking and closes his eyes. At this point I tell the doctor he should just talk to me.
                    Well I guess this is enough. Thanks for listening well reading...... If anyone can offer any help please do.

                    Pam
                    Son Les diagnosed 5/7/07-Right I/0 5/9/07-Stage 3C Non-seminoma Mixed Cell Germ Tumor-Tumors in liver, lungs, lymph nodes, brain-4XBED Finished 7/31/07 HCG 9 tumors smaller, brain lesion gone-9/30/07 HCG 999-TIPx4 started 10/2/07, IU 11/29 Told he had Choriocarcinoma Syndrome HDC and Stem Cell Transplant to begin 1/3/08 Finished Transplant 3/1/08 HDC and Stem Cell Transplant Failure 3/20. 4/17 RPLND & Liver resection, Molecular profiling of tumor, 6/2 Hospice Services- Passed Away 12/12/08

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                    • #11
                      Have you been in contact with the people at Sloan Kettering or Indiana U? They are the world experts in the treatment of this disease.
                      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.

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                      • #12
                        Wow, Pam, that's a lot to deal with. Please vent as often as needed. It sounds as though treatment went straight to chemotherapy given the spread -- so you probably don't have a pathology report to know what non-seminoma cell types are involved.

                        All our very best wishes to you and your son as the battle continues, and please keep us posted.
                        Scott, [email protected]
                        right inguinal orchiectomy 6/5/2003 > nonseminoma, stage I > surveillance > L-RPLND 6/24/2005 for recurrence, suspected teratoma but found seminoma, stage II > chylous ascites until 9/2005 > surveillance and "all clear" since


                        Your donation funds Livestrong services for people facing cancer now. Please sponsor my ride!

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                        • #13
                          Pam,
                          Welcome. Please vent as much as you need to. Together, the members here make a very strong and broad shoulder to lean on.

                          No "salvage", I hate that word.....this is round 2. David and Les, go to battle and kick the ba$t*^d to the curb!!!!
                          Retired moderator. Husband, left I/O 16Dec2005, stage I seminoma with elevated b-HCG, no LVI, RTx15 (25Gy). All clear ever since.

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                          • #14
                            Early Today I read an article about TIP . .

                            It seems that the % of people getting durable complete
                            response is pretty high!

                            At first I thought . . isn't VIP the standard 2nd line Salvage therapy? . . then it seems to me that TIP works better than VIP . . . .

                            so I think David you will be fine . . . same with Les

                            Good luck!
                            Orchiectomy 2007/7/11
                            BEP x4 7/31/2007 to 10/15/2007
                            RPLND 12/11/2007

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                            • #15
                              Battle Cry Gang "This M*[email protected] [email protected]*K^r is Going DOWN, Once and for ALL!"
                              Kinda my trademark here. In all sincerity, no mercy. Dave & Les don't dirty the curb. Inhialate the SOB. We're at your back.
                              Mark
                              I Love My Pack!

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