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A visit to MD Anderson. A crying Butt.

Butt's picture
Butt
Posts: 355
Joined: May 2018

I am currently en route from a trip number 4 to MD Anderson. All I was hearing chemo for life but during the second visit the doc mentioned potentially a TIL trail and did a blood work to see if I am a match that I was. During the 3rd visit I heard that that they have a couple of varions of the said trail. At that point I was not a candidate but my lung mets progressed despite of me getting chemo. Now I learnt that he meant another trail and did a blood work for that one but never mentioned one. It is immunotherapy for MSS. TIL sends your blood to a lab , harvest some cells that takes about 2-3 months and they infuse it back. For the new one that I am interested in I have to report back to TX in a about 10 days. I don't know the dates and supposed to receive a phone call. And from there the 1 st infusion. Supposedly it is in a high demand, spots are limited and people want to jump on it and I need to do it now and not to wait until let s say January. I made travel plans for my family in December. I am going to loose about 3. 5 grant if I have to be in TX. no they are not traveling there and I don t need to go into details. It is important for me to make those plans work because I don t have much left in my life. It is something that kept me going to do those things on Christmas and NY. Now it appeared it all would be flushed in a toilet. They have a group fir the trail and they need to start it on a certain date and be with the group. I also know how much my family was looking toward it. I have been crying fir the last 2 days. Butt who doesn't have any family in the US. 

Trubrit's picture
Trubrit
Posts: 5292
Joined: Jan 2013

I am sorry to hear your news.  Having been born and bred in England, and now living in America, I know how hard it is to live so far away from family and the freinds you grew up with; and any chance of having family visit (which I never have), would be such a treasured time; and now you have to choose between them and treatment.  My heart hurts for you!

I honestly do not know what I would do in your situation.  Would it be possible for family to re-schedule their trip to Sping time?   That would be my only suggestion.  The will to live and try anything would definitley outweigh my decision, I think THINK because I have not been in the situation, I just do know know. 

Thinking of you, and wishing you nothing but the best, the best of both family and the trial treatment. 

Tru

Joan M's picture
Joan M
Posts: 411
Joined: Oct 2016

Sounds like seeing your family over the holidays is extremely important to you. I missed Easter morinng with my grandchildren because MD Anderson wanted me to have a biopsy of lung tumor to see if I  qualified for a new trial and there weren't enough cancer cells to run the genetic test so I didn't get into the trial anyways.  

Did they tell you you are actually going to get into the trial or do you need more tests before you can get into the trial?  If it's a phase 1, there will be opprtunity for more people to get into it when it goes to phase 2 if it actually works at phase 1.  It wouldn't be worth cancelling holiday plans with your family if it's not an absolute certainty that you be in the trial.  Also as most trials go there is no gaurantee that the new meds will work.   

If your health is otherwise good and the tumors are not growing fast you may have time to wait for the next phase of this trial  or a different one later.  They always have new trials.  

What is the name of the trial you want to be in?   

Trubrit's picture
Trubrit
Posts: 5292
Joined: Jan 2013

Lets see if the mods can delete that post, and try again using a different format. 

Tru

Annabelle41415's picture
Annabelle41415
Posts: 6612
Joined: Feb 2009

It sounds like you are caught in a tough situation.  Like mentioned above, make sure you will be able to be on the trial and participate and possibly reschedule with your family.  Making plans so far in advance to get everyone together is a difficult task.  It would be nice if possibly you could have some of them come visit you if you are accepted into the program.  Wishing you a good resolve to this situation.

Kim

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