Relapsed extragonadal primary mediastinal non-semienoma

[Joe.shupe22]

Damn, I hope the radiation and chemo does the trick. You're in my prayers Martin. You have been on one heck of a journey!

[vault111]

Good luck with the new plan! A new drug gives hope. How many rounds of it are you expecting to do?

[Blondie]

The number of cycles was left open. Most likely until progression or severe toxicity of any form. If I'm very lucky and respond well and my bone marrow can take further chemo, that's another discussion.

[Rodrigo]

Hi Blondie,

The Memorial Sloan Kettering Cancer Center are making a study, called "Make an IMPACT." For mediastinal germ cell tumors. The study involves 'MSK-IMPACT' genetic testing which they hope give some clues into the mutations that are driving the disease. If any treatable mutations are found, they may be able to suggest treatment options or possible enrollment onto an available clinical trial.

If you have interest I can send you the email of the project cordinator.


Rodrigo

[Conor1988]

Blondie,

Sorry for not replying sooner to all of your updates. I am cheering for you and think of you often. Good luck and keep us posted.

Conor

[Trekga]

Wishing you the best!!!!

[stufax]

Hey Blondie,

How are you hanging out there? You just came to my mind. I have a CT scan next week and I am quite feared of a relapse because I have had some strange feelings in the groin recently. Hope you are doing better.

Tuomas

[Blondie]

It's been a while since I updated, and not much has happened for better and worse. I'm currently on my second cycle Gem+Cis, and it has not exactly gone according to plan. My platelets plummeted after the first infusion, so I was unable to receive days 8 and 15 of the first cycle. Same happened now on day 8 of the second cycle, although my platelets were 74 this time. Low but not alarmingly low, and I'm not very happy with my oncologist's decision not to give me any chemo. Somehow miraculously my markers have declined despite the lack of chemo, and AFP is now 120 and HCG 4. Not a dramatic decline, considering the timeframe is 6 weeks, but still a decline.

Otherwise I'm doing quite alright. I don't have any pain and chemo leaves me feeling miserable for about 5 days, but after that I'm fine. I had a CT yesterday, but will have to wait for the result. Depending on the result, I might have a biopsy to check for targetable mutations and receptors. I think my best bet is CD30 and Brentuximab. It's mainly used for treating Hodgkins Lymphoma relapsed after HDC with some remarkable success. I'm currently looking for doctors willing to administer it off label (in case the tumour is CD30 positive of course), since the only actively recruiting trial is in Indiana/MSKCC which is not an option.

[Blondie]

Tuomas, I sincerely hope your feelings are just signs of anxiety or at least unrelated to cancer. Good luck for the scan!

[Tarc79]

Not sure if it makes you feel any better, but my platelets have been stable around 34 for the last three years without any problems. I had two major surgeries without bleeding complications.

[Blondie]

Today I learned that the latest chemo has failed, my markers are rising fast and new tumours have appeared on the CT, mainly in the mediastinum, lung and pleura. Naturally the chemo has been aborted, and right now there is no plan. My oncologist has however ordered a tumor biopsy. Depending on the result, she was much more open to experimental targeted therapies and immunotherapies than before, and specifically mentioned CD-30 and PD-L1 as possible targets (implying treatment with Brentuximab Veditin and/or Nivolumab/Pembrolizumab, respectively). Seems my nagging about these therapies has paid off.

I know the evidence about the effectiveness of these therapies is scarce, and borderline anecdotal. The few existing small studies on Brentuximab yielded response rates of 20-40% and cure rates of 0-20%. Quite ****ty odds, but still better than doing nothing. But first it all boils down to whether the right targets exist on the tumor.

[Trekga]

BLONDIE~ So sorry to hear this. Please update us when you can about the new tumor biopsy. I'm not familiar witht he therapies you mentioned.

[Blondie]

Yesterday I had a core needle biopsy of one of my tumours in the mediastinum. The procedure was not very painful, the hardest part was lying still for the better part of an hour and I felt claustrophobic going in the CT scanner all the time. It was also shocking to see the amount of tumours that I could see on the doctor's screen in just one CT slice. I don't know how long it will take to analyse the tumour samples, or how long time the process of applying for off-label use of new drugs might take. My oncologist has never done it before, which of course causes more uncertainty. At the same time, I know she is trying very hard to give any therapy to me that I might benefit from.

[Blondie]

My oncologist called me today and there was a slight change of plans. Instead of me taking oral Etoposide until the biopsy is analysed, I will be taking Pazopanib. It is a relatively new targeted therapy, and a recent study has shown some efficacy in testicular cancer, with a majority of patients achieving a marker decline. Hopefully it can keep my disease stable for a while until I hopefully have more potent options available.

[Trekga]

BLONDIE~ I hope the Pazapanib can help decrease your tumor markers. I will keep you in my thoughts.