Been a while / updates / clnical trial

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Maelleous
Posts: 125
Joined: Tue Nov 01, 2016 8:13 am
Location: FL

Been a while / updates / clnical trial

Postby Maelleous » Tue Jun 20, 2017 4:45 am

Hey all -- it has been a few months since I have posted. I had to take a break from reading about cancer stories for a while, as I just coudn't mentally handle it for a while.

I'm 36 as of this part march. I had rectal cancer, ended up being stage 3C as the lymph nodes did not show anything pre-surgery. Post surgery it was in 9 of 38 lymph nodes. I had clean margins, but only within 1mm. Was recommended for 12 rounds of Folfox but I had cardiac arrest from the 5-FU on my 3rd round. I cheated death by surviving, but then had the paranoia of the cancer coming back since we know that stage of rectal cancer has high risk.

After extensive searching and flying from florida (where I live) to Duke, only to not get in, and then emailing tons of doctors from the clinical trial.gov website, I was able to get into one at the University of Pittsburgh. It is financially breaking, but every other week I fly up and get my last vaccination on Thursday. Thus far there are no side effects and no one in the trial has reported anything beyond mild fatigue. The trial was only for Stage 3 and Stage 4 post chemo that were in remission for a variety of cancer types. I've been feeling pretty good and after my last scan in the trial, July 6th, I will get my reversal scheduled. I'm really hoping this trial works and will have been worth all the time and money, esp since chemo is so risky for me.

On a side note, my dog got melenoma and the treatment for them is a vaccine. In dogs it is 70% effective and she had a super aggressive form and it appears to have worked. It sounded almost identical to what I am getting. I really believe vaccines are the way of the future for cancer and hopefully one day will ultimately lead to a cure.
M 35 yr
DX Rectal Cancer, 10/16 (symptoms Feb 2016)
Dx stage 2 - Surgery Oct 25 201 Loop ileo w/ j-pouch
Close margins within 1mm
9/38 lymph nodes involved on path / Stg IIIc,pT4, pN2 B, p.M0. MSS, K‐ras, NRAS, no mutation
Started Folfox - 3rd Treament, Dec 30th 2016 Cardiac Arrest - Lucky to be part of the 6% to survive!
S-ICD installed / Port Removed
Vaccine Clinical trial at UPMC - last shot June 2017
Reversal 8/1/17 - Praying this is it!
Still NED

User avatar
Maia
Posts: 2443
Joined: Fri Aug 24, 2012 8:00 am

Re: Been a while / updates / clnical trial

Postby Maia » Tue Jun 20, 2017 7:39 am

Maelleous, so happy to hear from you! I have been wondering how you're doing. I do remember the heart scare, and the impossibility of having chemo. I'm so, so glad to hear that you are getting that vaccine at Pittsburgh!!! Is it the MUC1 vaccine?

The financially breaking part is because of the traveling, right, not for the trial itself? In case you didn't hear of it, Corporate Angel Network allows cancer patients to fly for free in empty seats on corporate jets http://www.corpangelnetwork.org/

Be well, keep going!

Maelleous
Posts: 125
Joined: Tue Nov 01, 2016 8:13 am
Location: FL

Re: Been a while / updates / clnical trial

Postby Maelleous » Tue Jun 20, 2017 7:52 am

Thank you for the link Maia! I "can" afford it so don't want to take a seat from someone who can't. It hurts financially but I only have two trips left and I have already bought and paid for them.

The one I am doing is the INO-1500. I am in arm 6 (which I hoped for) that gives me the high dose of two different ones with the electrical pryalosis. Let me tell you, they say a "mild" electric shock, but WOW, it hurts like hell! Feels like you are getting tased 3 times really fast. Still a million times better than chemo!

My cardio-oncologist said I could do chemo again if I absolutely have to, but I would have to be hospitalized through it and put on nitroglycerin etc. It would be very risky. I'm just hoping it never comes to that. My heart is compeletely back to normal, I am getting off my meds at my next cardio visit (still on a low dose of a few BP meds just to be as a safe guard since I am still in the trial.)
M 35 yr
DX Rectal Cancer, 10/16 (symptoms Feb 2016)
Dx stage 2 - Surgery Oct 25 201 Loop ileo w/ j-pouch
Close margins within 1mm
9/38 lymph nodes involved on path / Stg IIIc,pT4, pN2 B, p.M0. MSS, K‐ras, NRAS, no mutation
Started Folfox - 3rd Treament, Dec 30th 2016 Cardiac Arrest - Lucky to be part of the 6% to survive!
S-ICD installed / Port Removed
Vaccine Clinical trial at UPMC - last shot June 2017
Reversal 8/1/17 - Praying this is it!
Still NED

User avatar
Maia
Posts: 2443
Joined: Fri Aug 24, 2012 8:00 am

Re: Been a while / updates / clnical trial

Postby Maia » Tue Jun 20, 2017 8:18 am

Hey, you won't take a seat for anyone, those planes have many empty seats : )
Maelleous wrote:The one I am doing is the INO-1500. I am in arm 6 (which I hoped for)


I guess is this one https://clinicaltrials.gov/ct2/show/NCT02960594 , even if the number is INO-1400..? Anyway, with the electroporation, is great. So sorry about the zapping part!
While you were out there having fun --kidding you---, the big brains oncologists reunited at ASCO some weeks ago and found out that for most Stage III patients 3 months of chemo are as good as 6 months. I know your case might be different but the take home message is: you probably had a good deal of 'necessary' chemo before stopping . viewtopic.php?f=1&t=58091 Thought you would like to hear : )

Maelleous
Posts: 125
Joined: Tue Nov 01, 2016 8:13 am
Location: FL

Re: Been a while / updates / clnical trial

Postby Maelleous » Wed Jun 21, 2017 4:53 am

Yes that is the one! Sorry I was thinking 1500 but it is the 1400 plus the other.

Thank you about the cheo - I have been told that by a few doctors, I am a bit short in comparison but holding out hope! I know most people get chemo/radition first, but since I was staged 2 instead of 3C prior to surgery went the other route. Always been a bit nervous about that.
M 35 yr
DX Rectal Cancer, 10/16 (symptoms Feb 2016)
Dx stage 2 - Surgery Oct 25 201 Loop ileo w/ j-pouch
Close margins within 1mm
9/38 lymph nodes involved on path / Stg IIIc,pT4, pN2 B, p.M0. MSS, K‐ras, NRAS, no mutation
Started Folfox - 3rd Treament, Dec 30th 2016 Cardiac Arrest - Lucky to be part of the 6% to survive!
S-ICD installed / Port Removed
Vaccine Clinical trial at UPMC - last shot June 2017
Reversal 8/1/17 - Praying this is it!
Still NED


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