Starting EP x 4 Monday 7/10/17

[Jacob]

How is everyone doing? I know I haven't posted in a while. I Start round 4 on Monday. It has been a strange ride. I had to get a shot of Leunasta after rounds 2 and 3. My white cell count was down to 2.5 from 5.2 and my ANC count was down to 0.7 from 3.0. They are now above 10 for the WC and the ANC is over 6. The only side effects I am having is ringing in my ears, which has gotten worse as the rounds went on. I seem to be more tired now which I was told would be the case, and I seem to have trouble sleeping towards the end of my two weeks off. It's probably stress thinking about the week on. I hope everyone is doing well. I have been thinking of you all.

In my case my anc was 0.4 and they gave me the option to wait an extra week instead of getting neupogen. We did this between round one and two as well as before round 3. Both times the WBC came up on its own to about 3.6.

I have pretty bad nuorpathy in my hands and ringing in my ears as well as hearing loss in the higher frequencies.

I just finished the last of the etoposide and cisplatin with still 2 more bleos to go. I just need to get past the next week since it's always rough after the long week.

I am thrilled we are at this point already. Keep fighting and stay strong

[Daniel_Eye]

Hi JKratz, I also had issues with my WBC having done 3 X BEP I had to put off my last weeks bleo infusion to let the WBCs rejuvenate. It happens to most of us. If you can, you should try to go for walks here and there, don't over do it just get out to a local track or maybe around your neighborhood for a few miles. It is good to sweat out all the **** trapped inside of you. Make sure to keep hand sanitizer around since your WBCs are low you don't want to risk getting sick...that could be a disaster. I hope the rest of your treatment sails by.

Best of Luck,
Daniel

[Ann]

Hello everyone. My son is 29 years old and has his first oncology apt Friday to set the plan in motion for his Chemo. I'm going to print out some of the comments here for him to read. I think they might help him with any fears he may have going forward with this. I thank all of you here, I feel like your my life line.

[Ann]

Hello everyone. My son is 29 years old and has his first oncology apt Friday to set the plan in motion for his Chemo. I'm going to print out some of the comments here for him to read. I think they might help him with any fears he may have going forward with this. I thank all of you here, I feel like your my life line.

[Jkratz]

I have completed my 4 rounds of Chemo. I had a CT Scan on Thursday the 28th of September. Went to the Dr. on October 3rd for the results and the nodes have all shrunk by more than 50%. All of them are back under 1 cm. We are back to active surveillance. Thank you all for the comments, they have rally been helpful during this.

[Jkratz]

Hi Ann,

I hope all is going well with your son. Please keep us posted on his progress. We are all here to support him and you during this.

[biwi]

Good news! Fingers crossed on surveillance!

[Jkratz]

Got hit with a bit of bad news. My last scan showed 2 more nodes that the cancer has moved to. I had a biopsy confirming this. I was asked to participate in a clinical trial. It is called "Standard-dose versus High-dose Chemotherapy for treatment of Relapsed Germ Cell Tumors"

The first group that I could be randomly selected for would e the Standard of Car which is 4 cycles of Paclitaxel, Ifosamide, and Cisplatin, also known as TIP. The second group excludes the Cisplatin, and the Paclitaxel is give over 3 hours instead of 24 hours for the first 2 cycles. Followed by 3 cycles of of Carboplatin, and Etopiside with Stem Cell re-infusion. The stem cells are taken in between cycles 2 & 3.

I am meeting with the lead doctor Thursday to discuss the trial itself.
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I was wondering if anyone here has participated in this clinical trial or any clinical trial?

[biwi]

Sorry to hear the bad news! That must be devastating. I know others here have mentioned that study but I don't recall any details or who it was. Hopefully you get someone here who knows more.

[Mick]

I am sorry to read about your relapse. My 18 year old son was receiving treatment for 2c Seminoma around the same time as you were and I remember reading all of your posts. I don’t have any information to share regarding clinical trial but I was wondering why you opted for 4 EP instead of 3 BEP? Thank you for sharing your story.

[Jkratz]

Thank you for your kind words.

Biwi. I was more pissed off and scared then devastated. It has only been 7 months since treatment ended. it was 18 months prior when the first two nodes showed up on a scan. The length of time has me worried more that anything. I found out on 4/9 and have since come to terms with it now and am just focusing on the decision to partake in the trial or not. I am told that the standard of card of TIP has a 60 - 70 % chance of working.

Mick, I hope your son is doing well. My doctor chose 4 EP over 3 BEP due to the fact that the Bleo has been known to damage the lungs.

[Skywalker]

I might be able to help a little here or at least tell you the advice we have gotten recently. I also have a thread titled recurrence which will give you more information. I didn't dig back to see what the pathology of your tumor was but here's what I know about the trial and options at this point. The trial is world wide and randomizes you into two groups 4xTIP vs 2xTI + 3 HDC (carboplatin and etoposide) with SCT. My husband was asked to join this trial in March but we opted not to for a variety of reasons. Primarily, he wanted to try TIP at our local hospital and wasn't ready to commit to being randomized into the transplant group. We got a few expert opinions which said different things. Ultimately we opted for two cycles of TIP and are about to start 2 cycles of HDC with SCT which is what Dr. Einhorn recommended. TIP is standard of care and a lot of people have a full response to it. The question the trial is asking is whether or not using HDC with SCT as a second line treatment is more effective than using it as a third line treatment. There is a retrospective study that says that it is and the hypothesis for the trial is that the TICE group with have a 15% better outcome than the TIP group. We have talked to a lot of doctors (MD Anderson, IU, receiving treatment at University of Chicago) and the bottom line is that they just don't know enough to say it is better to do it that way. My husband has an HMO and they have approved his TIP-CE/SCT regimen because it is also standard of care. The TIP vs TI argument comes down to a few things. The first is that you can test your sensitivity to the platinum by receiving the P in the first rounds and if you are sensitive it can result in better disease control/consolidation before hitting it with the high dose therapy. The second argument is that you get some disease control with the TI, don't mess with your platinum sensitivity, and then hit things hard with the high dose therapy for three rounds. I can tell you I have read countless studies on salvage therapies and there really isn't an answer. There are hints of what might work based on your disease and risk factors but that's about it. My husband felt like he just wanted to do TIP and to leave HDC as a third line option but ultimately if it is going to work as a third line option it will work as your second line option as well so it's not like you are necessarily losing out by doing it earlier. My husband responded well to his first two cycles of TIP and ultimately decided to go forward with HDC and transplant to hopefully be rid of the cancer for good. However, his regular oncologist and transplant oncologist both stated that he could have just finished the last two cycles of TIP and that may have been enough. We are diving head first into this transplant process (collecting next week with HDC starting May 25th) and I question the decision every day. It's daunting and there is so much follow up care required. Ultimately, you have to do what is best for you and what your doctors recommend but I just wanted you to know that it is possible for you to go straight to high dose chemo or combined salvage high dose chemo without being part of the trial. Although, my husband is doing the "Indiana protocol," they also were going to let him switch to the TI-CE protocol off trial if that was what he wanted. I don't want to sound like I am anti clinical trial either. It is obviously very important for them to answer the question they are asking--it just wasn't right for us. Good luck and I hope your decision comes more easily than ours did. It's such a hard place to be in.

[Mike]

I believe you are at MSKCC and Dr. Feldman is the lead for the entire Tiger Study that you are mentioning. https://clinicaltrials.gov/ct2/show/NCT02375204 I personally wouldn't have any reservations about the trial. I know experts world wide that agree that the answer to if second line therapy or high dose therapy with stem cell rescue is better for relapses is still just one of the unknowns in treating germ cell tumors. The good news is that either way, you are getting one of two treatments that experts would argue is the best, you're essentially just allowing the randomization and not the decision of the experts to make the decision. I would guess that you could meet with a dozen experts and 6 would go one way and 6 the other. I would feel like I am in good hands at MSKCC and the trial but by all means ask for second opinions if you would like as that is certainly your choice.

Mike

[Jkratz]

Thank you skywalker. I wish the best for your husband. It sounds like you are making the right decision for you and your family. It is a very hard place to be in due to all of the unknown from the trial, but I cannot help to think that I was given a 99% chance with the 4 x EP due to the earliness of the catch and it still showed up again, this time only 7 months after treatment ended.

Thank you Mike. You are correct with me being at MSKCC and Dr. Feldman is heading this trial. I am meeting with his partner tomorrow Dr. Funt to go over the trial itself. The one thing that has made me feel good about the trial is that the drugs and the procedures have all been used in the past and there is nothing new.

I will post again tomorrow after the appointment with what I have learned about the trial.

[Trekga]

Wishing you the best. So sorry.