Need Help From Phranie51 or people who fought recurrences

mehrdad357

Hello,

I had right BOT HPV+ diagnosed in August 6, 2016. That was "treated" with 35 rads and 9 weeks of Erbitux. As of Feb. or March 2017, I resumed a normal life minus side effects of radiation.

The cancer recccured on August 2 2018 in right BOT and tonsil. A smooth talkig SO at Stanford promised he'll "Cure" me, I thought to myself he may add 2 or 3 years to my life, and went ahead with him. Either he blew it or our MRI and Pet scan machines are useless, because he told me the tumor was 10 times the volume of what the MRI showed! In any case operation failed!

I started seeing an MO who is more real than the SO, he gave me a choice between immunotherapy with 20% chance or chemo with 40% chance of success. I started immunotherapy with Opdivo around late January of this year, with 4 suspect areas around the throat and mouth. After 6 sessions of Opdivo he noticed a new tumor on RHS of my neck and stopped Opdivo. With MRI, Pet scan and biopsy, he told me there is another one in my mouth which is 2.5 cm.

He said we need to switch to chemo and we did on 3/14/19. He gave me Taxol (Paclitaxel), Carboplatin (Paraplatin) and Erbitux (Cetuximab). I asked him about Erbitux being only targeted therapy drug and not a chemo, and he told me let me be the doc! After 2 sessions of chemo I got very sick and was hospitalized due to very low count of Neutrophil at 210 (A type of white blood cell) and in hospital they gave me anibiotics round the clock and Neupogen to boost neutrophil production, and I went all the way up to 1780 or 1.78 , then they released me. I did a 3rd chemo after release and my neutrophil dropped to 993 or 0.993 and my MO stopped the next chemo, told me he will resume chemo when I am above 1 or 1000. As of now I have not gone above 1 (0.991 and 0.985) and no chemo. That is the only "treatment" I am getting is 3 shots of Neupogen in 3 consecutive days, hoping to get it to 1.

The visible tumor has gone from original size of 1.2 cm to 1.8 cm (50% increase), and when I asked the doc if the one in my mouth area has increased the same percent, heh said most possibly yes. I asked him this past Tuesday if there is anything else that he can do, and he said nothing else. Even with chemo on 3/13/19 he told me that statistically my mean survival time is 9 months (12/13/19), I don't dare asking him what it has become now with no treatment. When I told him about 12/13/19, being statiscally ther end of me, he got upset an d told me that is statistics, not necessarilly you. I had to remind him that I was speaking statistically too. He also reminded me that I don't qualify for any good clinical trial, if I have not finished chemo.

He also told me that his norm for stopping chemo is neutrophil of 1.5 (1500). The only reason he dropped mine to 1 is due to the fact that he has gone all the way back to 2012 and observed that I have had a lower than average Neutraphil count since then, the highest I had was 1.257, and I am low both on white and red blood cells. He sent me to a hematologist. The hematologist told me he can do a bone marrow exam (biopsy and aspiration) to confirm or deny it. I asked what if I my bone marrow does not produce enough cells? He told me we cannot do much. I don't dare mention blood transfusI don't dare ion to him, because I know he'll get very insulted.

So I have 2 choices:  Choice 1 is to do nothing and wait until I die: Not a good one

Choice 2: I had gone to UCF about 3 months ago for a 2nd opinion, and the MO told me that my MO is 1 of the leaders in the field, so at this point I don't see much value in a 2nd Opinion.

Is there anyone who can help me with my problem? Please be kind enough not to send me prayers, cause I don't even believe in God. I reaaly appreciate any practical adviced that I can get.

Thank you

Mehrdad357.

 

 

 

 

 

 

 

 

 

joannaw81

Hello Mehrdad, I was actually

Hello Mehrdad, I was actually thinking how you are since I havent seen you post anything lately. I wish I had some words of wisdom but I don't. The only thing that comes to my mind is for you to get the second opinion whcih you feel is pointless; even though MO has the best reputation. Are you able to travel? how about Memorial Sloan Kettering in NYC? they actually have another location in Baskin Ridge NJ if that is better. They are known for having one of the best cancer treatments/doctors in US. Keep us posted.

https://www.mskcc.org/cancer-care/types/head-neck

 

SuzJ

So..

Correct me if I'm wrong, no radiation? No surgery? (for this time around?)

If not, why not? I was told that chemo isn't what kills it, chemo is just given to boost the effects of the radiation.

 

It's your life. Literally - Get a second opinion, a third, FIGHT, cos you CAN do this again!