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by IsmailMehdi
Wed Jul 14, 2021 10:02 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: FOLFIRINOX mid treatment
Replies: 1
Views: 461

FOLFIRINOX mid treatment

I was planning on sharing how treatment halfway though was going. Unfortunately, i don't think my experience is representative of how it usually goes. I've have had 1 FOLFOX + 3 FOLFIRINOX and since the second treatment things went off the rails. It started with what looked like an ear infection, ba...
by IsmailMehdi
Sat Jun 05, 2021 1:50 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Starting point
Replies: 45
Views: 6995

Re: Starting point

Thanks Bpaint,
We just got with a support center that offers all kinds of these services. I will try the acupuncture.
by IsmailMehdi
Sat Jun 05, 2021 1:48 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Rectal Cancer: Habr-Gama Watch and Wait Strategy to Avoid Surgery
Replies: 550
Views: 246829

Re: Rectal Cancer: Habr-Gama Watch and Wait Strategy to Avoid Surgery

Hi Ismail, Jolene is giving you great advice! I notice your tumor is very low just like mine. In fact the lower part of my tumor was into the sphincter muscles. My surgeon told me that if she had to do any cutting that involved the sphincter muscles it would likely have a major impact on my quality...
by IsmailMehdi
Fri Jun 04, 2021 9:15 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Rectal Cancer: Habr-Gama Watch and Wait Strategy to Avoid Surgery
Replies: 550
Views: 246829

Re: Rectal Cancer: Habr-Gama Watch and Wait Strategy to Avoid Surgery

Hi Jolene, Yikes, i totally miswrote the local recurrence. I'll update my post. What I meant to say is surgeons expect that there will NOT be a recurrence for high 90% of TMEs with good margins. That's what my surgeon talked about in terms of "local" cure. You're right about veering course...
by IsmailMehdi
Tue Jun 01, 2021 1:56 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Rectal Cancer: Habr-Gama Watch and Wait Strategy to Avoid Surgery
Replies: 550
Views: 246829

Re: Rectal Cancer: Habr-Gama Watch and Wait Strategy to Avoid Surgery

Hi Jolene, You're lucky your surgeon is pro-WW. It seems that surgeons favor cutting for the most part. The odds they cite for NO local recurrence are usually in the 90+%. But there's trials now for organ preservation that show it's a viable path. The protocol you are on sounds very good, i hope to ...
by IsmailMehdi
Tue Jun 01, 2021 9:03 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Rectal Cancer: Habr-Gama Watch and Wait Strategy to Avoid Surgery
Replies: 550
Views: 246829

Re: Rectal Cancer: Habr-Gama Watch and Wait Strategy to Avoid Surgery

I hope this isn't too late. I'm not familiar with the concept of using signatera for CCR management so I can't really comment. My doctor who is very pro WW has never mentioned this method of managing before and I don't think I've come across any research that uses signatera to make judgment of whet...
by IsmailMehdi
Thu May 20, 2021 4:13 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: New Lung Nodules Found On Latest CT Scan
Replies: 28
Views: 2343

Re: New Lung Nodules Found On Latest CT Scan

prayingforccr wrote:It’s disease.

No curative intent.



Tough one prayingforccr. But as others mentioned, it’s a setback but there’s still a path forward. Many have recovered from where you are. I am 2 years behind you, diagnosed this April and I am rooting for you as much as everyone.

You will get through this!
by IsmailMehdi
Tue May 18, 2021 9:54 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Starting point
Replies: 45
Views: 6995

Re: Starting point

Thanks for the information on the pump. Now I understand the pump disconnect operation a little better. I have a hypothesis/speculation about the pump and the infusion: If you were to do a bit of light exercise for about half an hour a day while the pump is on, wouldn't this increase the blood flow...
by IsmailMehdi
Mon May 17, 2021 5:02 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Moving to every 6 months, port removal
Replies: 19
Views: 5061

Re: Moving to every 6 months, port removal

Well. I still have my port. IN A JAR!!!!! The nurse asked me today if I wanted to keep it. Heck yeah I do. It was super easy, the nurse marveled at my journey. I told her I didn't do anything remarkable, just showed up for chemo and resection! Came home and made a delicious roasted tomatillo salsa....
by IsmailMehdi
Sat May 15, 2021 6:52 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Starting point
Replies: 45
Views: 6995

Re: Starting point

I have another few questions that I forgot to ask before, if you don't mind, since I have never had any experience with a pump. After the 46 hours on the pump do you have to go back to the infusion center for the disconnect, or can you safely do the disconnect yourself from home? If you have to go ...
by IsmailMehdi
Fri May 14, 2021 2:55 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Starting point
Replies: 45
Views: 6995

Re: Starting point

Good news re prostate! You should probably plan on drinking warm or hot, not room temp, liquids for the first few days of every cycle with oxy. Unless, I suppose, you are icing. I don't know where you are located, but I live in Maine and started folfox on May 4th in 2018. I am normally a person who...
by IsmailMehdi
Fri May 14, 2021 9:56 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Starting point
Replies: 45
Views: 6995

Re: Starting point

Thank you for posting your "stream of consciousness" to describe your first FOLFOX session. This was a very good overview for those of us who have never experienced FOLFOX. For your next cycle I suppose that the routine will be much the same, except that it will need to involve an additio...
by IsmailMehdi
Thu May 13, 2021 5:53 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Starting point
Replies: 45
Views: 6995

Re: Starting point

Day 1 is FOLFOX only, FOLFIRINOX is next as of session 2. ok Day 1 is in the books, here's a summary: 15 minutes meeting with the Chemo Teach nurse. Was supposed to be 45 min but since the port was going in at 9, we had to cut it short. Fortunately, thanks to information from this board (Green Tea! ...
by IsmailMehdi
Thu May 13, 2021 1:04 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Starting point
Replies: 45
Views: 6995

Re: Starting point

According to famed medical text Wikipedia, it's the same drugs but FOLFIRINOX is harsher (it is used mainly for pancreatic cancer) and FOLFOXIRI is usually administered with bevacizumab. Added later: and I happened upon this just now https://ascopost.com/news/april-2021/addition-of-neoadjuvant-folf...
by IsmailMehdi
Thu May 13, 2021 12:48 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Starting point
Replies: 45
Views: 6995

Re: Starting point

Dammit, you are so right Rob. It IS FOLFIRINOX and not FOLFOXIRI. And it is much more intensive. Yikes! I guess I wanted to be as aggressive as the cancer. This may be that. I have the port put in, 1/2 hour later im getting chemo. Right now that I am hooked-up getting drips of oxaliplatin and Leucov...

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