High Dose Carboplatin

[Ozy]

My husband is facing 2 HDC with Carboplatin for relapsed yolk sac after 14 years being clear. After 4TIPs AFP fell from 88000 to 650, mass in the liver shrank twice to 4 cm, lungs are clear, RPL nodes apart from cloud around IVC are normal size, cloud has shrunk from 8cm to 6cm, IVC seems to be less duslocated. We are worried dead about HDC -please your experiences, advices. RPLND is next year, will find out about it later, now is stem collection time and first HDC.

[Ozy]

So our advice to anyone who is considered clear after 5-8 years- check your tumour markers at least once a year: we discovered relapse by chance -light belly bloating, but mets were in the lungs, liver, RPLNs

[RJKD]

So sorry to hear about this. 14 years...that's so unusual. What is his story?

[Blondie]

I finished my first HDC cycle recently and will soon do my second. It was quite brutal, much worse than standard dose chemo. The nausea is much more intense during chemo, and I was knocked out for 10 days after the stem cell infusion. The good thing is it gets better. I've been out of hospital for a week now, and already feel much stronger and I eat normally with good appetite. Wishing you all the best with your husbands treatment, and hoping for the best possible outcome. What regimen will he be receiving?

[Ozy]

Thank you for the information. He had seminoma and mixed non seminoma 14 years ago, 2xORI, 3BEP, normal markers after 2nd BEP. I believe endocrinologyst should have checked his markers as he was doing bloods for him anyway, so ask your endocrynologyst to add this test for yearly check up.

[Ozy]

Stem collection is done through cyclophosphamide-not a piece of cake. After TIPs he was getting better every day, with stem cells today is the 9th day and he is weak and the heart is pounding. We assumed it is because HB is low together with neutrophils and platelets, or should we worry? His normal resting pulse is about 50-60, now it is 75-80, blood pressure is fine, no fever. No neutrophils at the moment and platelets are below 50. Doctors expect to start stem cells collection soon

[Ozy]

14 years ago no lymph nodes were affected. Just slight raise of the markers few month after surgery, that's why he had chemo

[Ozy]

Hi, you might remember my post about expected high dose for my husband, who has a relapse after 14 years being clear from initial TC. He has done high dose chemo of carboplatin and etoposide and stem cells transplantapart. He got home last Tuesday, HgB is 102, not too low, and other blood counts are growing slowly. His GIT seems to be recovering (he lost 10 kilos and has not gained weight)but ringing in the ears and loss of high pitch sounds drives him mad. Does anyone know whether it is permanent? Oncologist said that high dose stays in the system for two month. It seems like ringing in the ears gets worse. What can be done? Also it seems like sensitivity in the feet worsens as well. So he is pretty desperate. Do you have any experience with this after high dose? He has also done 4 TIPs starting from middle of June this year. Also, does anyone have experience with Bactrim DS, we are supposed to start it tomorrow. I checked internet for side effects and i am horrified. Please share your experience

[Ozy]

Hi Blondie, how are you feeling?

[Ozy]

My husband almost died in hodpital after stem cells transplant due to dehydration, diarrhoea and sepsis, they had to remove hickman line because of infection. So he refused second HDC with transplant. Does anyone know why they have protocol for 2 transplants?

[Blondie]

Hi Ozy, I'm sorry your husband has had such a rough time during his HDC. HDC is by no means a walk in the park for anyone, but your husband seems to have had an unusually severe reaction. I'm glad he is slowly recovering by now. How long ago did he have his transplant?

I had my second transplant six weeks ago, and I can relate to most of the things your husband is experiencing, except the sepsis and dehydration. I just got the news yesterday that I've had a complete response to HDC.

I lost about 10 kg during HDC (14 kg counting from my pre-cancer weight), but have already gained 4 kg again. The first weeks are tough, but his appetite will come back and the nausea will go away.

I've also got tinnitus and high-frequency hearing loss. I've had tinnitus for ten years already, so I can't really tell if it's gotten worse from HDC. What I can tell you is that you learn to live with it. In the beginning it drives you mad, but now I hardly think about it. The high-frequency hearing loss I also find manageable, as it has little affect on normal speech. I can't hear my fever thermometer any more though, I should probably get a new one These things could get better, but it could take up to several years.

I've also lost most sensation in my feet. While it hasn't improved since chemo, I've learned to deal with it quite well. In the beginning it was hard to walk in uneven terrain since you don't really feel the impact i the same way you're used to, but your body compensates the lost sensation by relying more on vision instead.

I'm taking Bactrim, Valtrex and blood-thinning Dalteparin regularly (due to a pulmonary embolism), and haven't experienced any side-effects at all.

As far as I understand there are two cycles of HDC to deliver a sufficient cumulative dose of etoposide and carboplatin, but reducing the dose given at each cycle. Giving a single cycle (of higher dose) of HDC instead of two or three (with lower dose) seems to increase treatment related mortality (http://ascopubs.org/doi/abs/10.1200/jco.2006.09.2148). Only receiving one of the planned two cycles might however mean that the cumulative dose is insufficient to eradicate the cancer. Have you discussed this decision with your oncologist? Perhaps you should also contact Dr. Einhorn in Indiana, as your husbands case is very rare. I don't want to scare you, but your husband is like me in the highest risk group for HDC ((very) late relapse and mediastinal NSGCT). These groups were long believed to be incurable, even with HDC. Recent reports suggest that this is not the case, but it is still a very high risk group. I can only urge your husband to go through with the second cycle, unless his oncologist thinks otherwise. The side-effects of HDC are truly brutal, and your husband's fears are all understandable. But is it worth risking his life to avoid the side-effects? Maybe the second cycle can be given at a somewhat reduced dose, since his reaction was so bad?

[Ozy]

i discussed the matter with doctor Einhorn, but he is not optimistic and said they would not have suggested HDC in my husband's case in the first place, having such a late relapse. So dr E supports my husband's desision not to do second HDC. We got tumour markers results today and AFP fell from 238 to 156 only after HDC, so not sure whether it is a good sign. My husband does not want to die in hospital in his own feaces, he did not have nausea it was that terrible dark green unstoppable diarrhoea that weakened him so much.

[Ozy]

Hi Blondie, i am really glad for you!

[Ozy]

And thank you for your thorough answers:-)

[Blondie]

Hi Ozy,

I'm truly sorry for you and your husband. I cannot imagine how hard the decision whether to continue with the second round of HDC or not must have been. I would not give up just yet in your husband's situation, unless the doctors think the HDC is too risky.

While Indiana does not offer HDC to patients with late relapses, MSKCC does so with the similar TI-CE regimen (https://www.ncbi.nlm.nih.gov/pubmed/20194867). They have cured 2/7 late relapses, so a cure is not impossible. Until recently Indiana did not offer HDC to patients with relapsed PM-NSGCT either, but now they do with a 20% cure rate. It is thus not unlikely that they might offer HDC for late relapses in future.

While the drop in AFP is not ideal, it is still a drop. Do you know how the AFP has evolved between those measurements, and how far apart they are? Measuring from the start of the first HDC cycle and my release from hospital, my AFP actually increased from 400 to 1400. If you look at the attached photo, what happened was that it spiked for the first three weeks, and then dropped sharply. It has continued to decrease, and is now 7 which is normal. This could be what has happened in your husband's case.