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Feeling kind of cornered here...

Rhio2k
Posts: 1
Joined: Oct 2018

My father (75 years old) has been receiving chemo treatment for stage 4 (metastatic) lung cancer at the local Veteran's Administration, and they seem to be trying very hard to force him into an immunotherapy clinical trial at the adjoining Moffitt Cancer Center. It seems to be all risk, (they want to give him one of 2 drugs, and push him to the limit of his tolerance of said drug, regardless of effect, lack of effect, or harmful side effects, for which they want him to sign a non-indemnity/liability waiver. If something goes wrong, there will be no recourse.

The woman overseeing my father's chemo treatment at the Veteran's Administration is working very hard to pursuade my father to enter this trial, saying that he only has 6 more chemo treatment sessions available to him, and then they will have to at least discontinue the drug they feel has caused his tumors to decrease in size and halt progression, lest he suffer possible organ damage/failure, and place him on hospice. She claims after the drug is discontinued, the cancer will return at a greatly accelerated rate and his only hope is to discontinue chemotherapy right now, enter this trial, after which he can then go back on chemotherapy if the results were dissatisfactory (or, I'm thinking, if he's not left in such poor condition that he will be too ill to resume chemo).

It sounds like this woman is being offered some sort of incentive by Moffitt (who also work with the cancer wing of the VA) to obtain test subjects for this clinical trial, and she's trying very hard to make good on her end with these scare tactics. I'm not sure what do about this. I keep finding all kinds of Moffitt statements online about how they've been making leaps and bounds in immunotherapy research this year, but no recipients of previous clinical trials I can talk to.

jorola's picture
jorola
Posts: 193
Joined: Mar 2016

As no one here is a medical dr and can give you the real answers you seek, getting a second opinion would be my suggestion. Although my husband did not have immunotherapy, I do know others who have taken it and it has done great things for them. I do not know if their situations and your dad's are similar though. Some cancers can return very agressively after treatment is stopped. Again not knowing the exact type of cancer your dad has and not being a dr I really cannot comment specifically. What does your dad want to do?

scentient123
Posts: 3
Joined: Oct 2018

I am 70 and have just had a lobe of my lung removed, I am 10 days post op right now.  So, I don't even have any of the labs and test results on my cancer.  Your father sounds as though he has endured a lot to try to prolong his life already.  Stage 4 is difficult. The treatments are dificult, what he is going throug now and what they are proposing. But it all comes down to your father and what he wants. That is what really matters. 

I personally will not put myself through much more pain and suffering, to prolong my life.  The Pulmonologist was very optimistic that my cancer would be non small cell and 1a. I still don't know, hopefully I will find out this week.  But if mine has spread at all, I am not sure that I will have any more treatment of any kind except perhaps palative radiation for pain.

Both my mother and my father died of cancer, I cared for my mother for the last year of her life, going through both Chemo and radiation. In the end palative radiation was the saving grace to her pain and discomfort. But when it has matastisized beyond her lungs that was all that we did. She was relatively comfortable until the day that she died. 

My father on the other hand had his entire stomach removed, and suffered miserably until his death.  

They both made the decision for the course that they followed.  My father was only 62, my mother was 70. Our family has a very high rate of cancer and I always expected that I would have it one day.  Do my kids want me around longer? Sure, but I am the only one that can make that decsion. It really is about how your father wants to spend the time that he has left. 

Which treatment will prolong his life the longest, and be the most comfortable, I don't even think that the doctors know that. It is a hard spot to be in, for sure. 

I wish you the best of luck. 

 

Stu's picture
Stu
Posts: 9
Joined: Oct 2016

I am sorry to hear of your fathers situation.

Two years ago, almost to the day, I was diagnosed with stage 4 agressive metastasized melanoma in the lung. The largest tumor measuring 5cm. 

In discussions I was told it was not resectable, that conventional treatment had not been that successful in the past, and as things were my chances of surviving a year were about 20%. I was then offered to join a trial of immunotherapy which was being done on 600 people world wide and there were a few places left. I was nervous, scared and sceptical. However I asked my oncoclogist what route he would take if he was in my position. He assured me that he would opt for the trial.

My 36th and final infusion was done a few weeks ago and from the scans there is very little visible remaining in the lungs. They hope that the lesions they can see are just scar tissue. We will wait and see.

Sorry, my point really is that if it wasnt for the immunotherapy trial, in my particular case, I would not be around anymore. If I had the decision over again there would be absolutely no question as immunotherapy has given me a chance and hope. 

I wish you the best of luck and hope that whichever treatment you opt for gives your father the gift of quality extended life..

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