Announcement

Announcement Module
Collapse
No announcement yet.

2nd line chemo failed, what next?

Page Title Module
Move Remove Collapse
X
Conversation Detail Module
Collapse
  • Filter
  • Time
  • Show
Clear All
new posts

  • 2nd line chemo failed, what next?

    Well, despite the fact that scans done midway through my husband's 2nd line chemo on 11-27 showed improvement, it has totally failed. He finished his last VeIP a couple weeks ago but the scans that were done last week on 1-12 show significant growth in ALL areas, and new spots on liver and in lungs. We had already set up an appointment for this coming week at Dana Farber because we were not pleased with the horrible communication problems and constant delays we dealt with at Mass General, as well as their refusal to follow Dr Einhorn's advice to do the high dose. We would have (and in hindsight SHOULD have) made the switch sooner, but he was in immediate need of treatment at the time an Dr Einhorn did say their choice to go with 4 VeIP was reasonable if they felt so strongly about not doing the high dose, so we decided to do the treatment then go to Dana Farber for whatever came next. Since the lungs and tumor markers showed significant improvement after just 2 rounds and the abdominal mass wasn't any worse we thought we were on the right track. At that point they did a liver biopsy to figure out why that was a bit worse, but that came back as necrosis. they also did another biopsy of the large abdominal mass, which again came back necrosis. Things grew significantly after these biopsies, so obviously those results are not very useful. As of last week, tumor makers had shot back up to 66,000 (was down to 16,00 after 2nd cycle). Between those numbers and all the new growth despite all the biopsy results and while on chemo, something is definitelty up. The local oncologist feels that with the recent rapid growth there is very little time to figure out the next step. Lucky we already had the appointment for this week. I've read up on the various options after failing 2nd line chemo, but I would really like to hear from people who have done them and also would like to hear from people who have been to Dana Farber so i know what to expect going in. We are hopeful that they will have options for us and that they can start immediately. How quickly do they move on things there? Should we expect to be asked to stay and start right away? And for those who have done more chemo after failing 2nd line, how bad was it? My husband is still recovering from a couple severe complications that happened right after his last dose of VeIP, he had terrible esophagitis that resulted in an trip to the ER and not being able to eat for several days, and the coughing from that irritation led to a collapsed lung that put him back in the hospital. Needless to say, he is in rough shape (although improving since he's been able to eat again the last few days) and starting a new chemo soon would be hard on him, but we have no time to waste and whatever we have to do next has to be immediate, so really hoping whatever drugs they may try next are not as brutal as the last ones. Any thoughts?

  • #2
    Oh so sorry. Have you emailed Dr. Einhorn yet with the failure of 2nd line chemo? Is there a way to fly out to IU for treatment? I would definitely email him now. I can't imagine what your husband or you are dealing with. But, IU is the top of TC trials, etc.
    Update when you are able.
    Son Grant
    dx 12/21/16 at age 17

    BEP x3
    Post Chemo CT Scan on 3/28/17 still showed a few nodes over 2 cm
    2nd Post Chemo CT Scan on 4/27/17 showed all nodes still over 2cm
    Post Chemo RPLND 5/8/17: Periaortic Teratoma, Intraaorticaval Teratoma, and Paracaval Teratoma found.

    Comment


    • #3
      Sorry to hear that, I can imagine the disappointment when you and your husband saw that things were still growing. I don't have any direct experience or knowledge to share with you. I do know that eodtech2001 on here has been through HDC and is all clear now. i'm not sure where he was treated or how bulky his disease was though. I believe there are others as well, if you search around there has been at least some posters discussing HDC in the past.
      6/5/15: bHCG 27,AFP 8.66, LDH 361, 5.6cm lymph node - Stage IIC
      6/16/15: Left I/O 85% EC, 10% chorio, 5% yolk sac opinion 2 (mayo) 90% EC, 10% yolk sac
      7/7/15: bHCG 56, AFP 42, LDH 322
      7/13/15 - 9/18/15: 4xEP
      10/1/15: bloodwork normal, ct scan shows 2 lymph nodes 1.0cm
      10/26/15: 2nd opinion on CT results - lymph nodes normal. Surveillance!
      4/6/16: 1.7cm X 1.5cm lymph node found with markers normal.
      4/20/16: RPLND @ IU - teratoma only!
      3/29/2018 all clears up to this date!

      Comment


      • #4
        HDC is what Iíve seen others do at this point. Iíve seen all clears come out of that as well.
        3/29/17 Diagnosed 100% Embryonal 4/10/17 Left I/O CT scan shows a few suspicious lymph (biggest 1.9 cm) 5/8/17 - 7/3/17 3xBEP 7/20/17 CT Scan Clear, AFP has uptick to 19 8/16/17 AFP Drops in half to 10, ALL CLEAR! 9/12/18 All clears up to here!

        Comment


        • #5
          I am 4 yrs in remission. I had hdc done in Nashville. I had 2 cycles of ViEP to stablize my cancer. It had spread to my lungs and liver. If you have any questions feel free to email at eodtech2001@gmail.com
          Jan 2012- U/S mass in Left testicle
          Feb 2012- I/O performed to remove cancer
          Mar 1,2012- pathology pure seminoma
          Mar 7, 2012 PET SCAN stage IIa
          April 2012 Mayo clinic carbolite.
          May 2012 carbolite failed, started BEP x3
          August 7th 2012- BEP complete
          April 2013 CT/PET show relapse
          May 2013 RPLND
          Aug 2013 Relapse again Started VIeP x2
          Oct 2013 HDC AUTOLOGOUS
          Dec 2013 HDC completed CT/PETSCAN 1.1 cm x .8 cm right lower lung lobe
          Feb 2014 confirmed false positive all clear FINALLY !
          Jan 2015 1 year cancer free Pet/CT scan
          Jan 2016 2 years cancer free "Pet/CT scan
          Jan 2017 3 years cancer free "Pet/CT scan
          Jab 2018 4 years cancer free "Pet/CT scan, labs, xrays

          Comment


          • #6
            HDC is the way.

            I know some people that went through 2x HDC after failed 2nd line chemo and are already 4 years clear.

            Comment


            • #7
              Thanks for the replies. My only concern with the HDC is time seems so limited, I'm not sure they can collect stem cells in time to start chemo and make a difference. The cancer grew and spread even while on VeIP and it's pretty bad now. Halfway though the lungs were a lot better and they were expecting these latest scans to be even better, so it was a total shock to hear this news. They were concerned with the tumor burden being too high for HDC before, so now I just don't know what to think. Our appointment at Dana Farber is first thing tomorrow morning, with Dr Sweeney, sounds like he's the guy most likely to have a solution for us. We're settled into our hotel near Boston but my husband is having a rough night, mostly anxiety I think. Here's hoping the morning brings some good answers.

              Comment


              • #8
                Try to only worry about things you can control, you need to just accept those you can't & try to move forward. I know is is d@mn hard but you gotta do what needs to be done sometimes. I wish I could be more helpful.

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

                Comment


                • #9
                  I can completely understand you. My husband experiences a very rare TC relapse with transformation into sarcoma. (Without teratoma in primary tumor nor in metastatic sites)
                  My advice is to send the samples from biopsies to be reviewed by IU or MSKCC. The most important step is to know exactly what you have to face. As I can understand in your husband's case the biopsy was never clear (except from teratoma components). Regarding the biopsies which revealed necrosis I am a little bit concerned since the liver mets are getting bigger.

                  Comment


                  • #10
                    Dr. Sweeney is certainly the guy to see at Dana Farber and he is a wonderful man. I have had the pleasure of speaking with him several times. There are options for other rounds of chemotherapy besides HDC with stem cell rescue and surgical interventions may be possible as well. I would also ask him about the utility in doing any molecular analysis of the tumor tissue. There haven't really been many actionable mutations with testis cancer but you can ask and see if he thinks it may be worth it.

                    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

                    For some reason I do not get notices of private messages on here so please feel free to email me directly at mike@tc-cancer.com if you would like to chat privately so as to avoid any delays.

                    Comment


                    • #11
                      Regarding molecular analysis you can also contact with MSKCC and ask if you can participate in MAKE AN IMPACT program. You should send an e mail to realesd@mskcc.org. The whole program is free.

                      Comment


                      • #12
                        Originally posted by Mike View Post
                        Dr. Sweeney is certainly the guy to see at Dana Farber and he is a wonderful man. I have had the pleasure of speaking with him several times. There are options for other rounds of chemotherapy besides HDC with stem cell rescue and surgical interventions may be possible as well. I would also ask him about the utility in doing any molecular analysis of the tumor tissue. There haven't really been many actionable mutations with testis cancer but you can ask and see if he thinks it may be worth it.

                        Mike

                        My initial impression of him was very positive, we liked him very much, unfortunately we didn't get the full consult we wanted because it turns out the rough night my husband had was not from anxiety but from some pretty messed up blood counts. His hemoglobin was down to 3.2, and all his electrolyes were off, and so were liver and kidney function. He was in such bad shape that Dr Sweeny says we really can't make a treatment plan for the cancer until that is all stabilized. Because of this he thinks the HDC might not be a good choice, but he's not taking that off the table yet, waiting to see how things go. He had 5 units of blood, 2 plateletts, 2 plasma, tons of fluids, etc and is in ICU. They did a bunch of scans to check for bleeding, and so they are comparing those to the ones we had done last week and hopefully that will give a better idea about how fast things are growing. Have not got the report yet, but they did tell me immediately after the scans that they do see little new growth, but sounds like it might not be as rapid as they thought back home, so hopefully that gives us some wiggle room time wise. They also said the liver and lung growths look different than they did, not sure how of if ti's a good different or a bad different, waiting to hear the full report. Also looks like the liver mets were bleeding a little. The bad news is they did a brain CT too and found 5 small growths. Biggest is only 1cm and he was evaluated but they nuerological team and they don't think they are causing him any problems at the moment, other than some minor things we'd attributed to chemo brain that could be from that. I'm not worrying too much about the brain right now because its' really the least of his problems at the moment.

                        Comment


                        • #13
                          So very sorry!!!!!!
                          Son Grant
                          dx 12/21/16 at age 17

                          BEP x3
                          Post Chemo CT Scan on 3/28/17 still showed a few nodes over 2 cm
                          2nd Post Chemo CT Scan on 4/27/17 showed all nodes still over 2cm
                          Post Chemo RPLND 5/8/17: Periaortic Teratoma, Intraaorticaval Teratoma, and Paracaval Teratoma found.

                          Comment


                          • #14
                            I am sorry to hear that he was in such shape and with a hemoglobin of 3.2 he had to be feeling pretty darn bad. Hopefully, they are able to get him stabilized quickly and find any bleeding, if there is any. I can see where Dr. Sweeney is kind of without a plan given his situation as HDC is certainly not without it's risks and doing so in such an acutely ill person I wouldn't see as such a great idea. Hopefully, as the reports come in you will be given some more information and plans.

                            As far as the brain mets, I personally think that they are a lot more common than we know but that the brain is not always imaged so we don't know that they are there. Then the chemotherapy clears them up without issue. The Global Germ Cell Group, Dr. Sweeney was actually one of the authors, reviewed cases with brain metastasis and one-third of those with relapse mets and one-half of those presenting first with brain mets were asymptomatic. If that holds true then some guys may have them but never have them imaged because they never had any symptoms to suggest that imaging was necessary. Obviously, they are serious and better not to have them.

                            I think they key now, as you mentioned is to get him tuned up and out of the ICU so that a game plan can be made.

                            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

                            For some reason I do not get notices of private messages on here so please feel free to email me directly at mike@tc-cancer.com if you would like to chat privately so as to avoid any delays.

                            Comment


                            • #15
                              I have been thinking about your husband and you. Any update?
                              Son Grant
                              dx 12/21/16 at age 17

                              BEP x3
                              Post Chemo CT Scan on 3/28/17 still showed a few nodes over 2 cm
                              2nd Post Chemo CT Scan on 4/27/17 showed all nodes still over 2cm
                              Post Chemo RPLND 5/8/17: Periaortic Teratoma, Intraaorticaval Teratoma, and Paracaval Teratoma found.

                              Comment

                              Working...
                              X