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by mpbser
Wed Oct 09, 2019 6:08 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: How long does MSK take to get approval to install HAI pump?
Replies: 10
Views: 1651

Re: How long does MSK take to get approval to install HAI pump?

"I'm told that the combination of Medtronic pump and Codman catheter is off-label and therefore needs FDA approval." Yes, the combination of Medtronic pump and Codman catheter is off-label and is in the process of investigation (trial) at NIH and MSK. That does not mean that doctors cannot...
by mpbser
Wed Oct 09, 2019 6:03 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: EXaCT1 Testing?
Replies: 3
Views: 728

Re: EXaCT1 Testing?

I like how Whole Exome Sequencing finds mutations that less comprehensive tests miss. If, for example, EXaCT-1 shows my husband's liver met (I assume Weill-Cornell is testing the met to the liver because I made the slide request to MSK) shares a mutation associated with breast cancer, he might benef...
by mpbser
Fri Oct 04, 2019 10:53 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: EXaCT1 Testing?
Replies: 3
Views: 728

EXaCT1 Testing?

Is anyone familiar with EXaCT1 testing or other Whole Exome Sequencing? Did you have it done? What did it tell you that you already didn't know about your cancer? How did it help guide you through treatment options? Here is what is on Weill-Cornell's website about it: Whole Exome Sequencing by Next ...
by mpbser
Fri Oct 04, 2019 7:51 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Regorafenib + Nivolumab - Immunotherapy might work in MSS CRC
Replies: 74
Views: 17663

Re: Regorafenib + Nivolumab - Immunotherapy might work in MSS CRC

I would not mind maintaining a spreadsheet of the data from those doing this combination. I know that others are tracking progress, but if we could collaborate, that would be great. I have started a collection from the data already available (Alanna Project, as of Sept 22nd). Only six patients so fa...
by mpbser
Fri Oct 04, 2019 7:10 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Do you have experience with CareOncology.com?
Replies: 7
Views: 1280

Re: Do you have experience with CareOncology.com?

Thanks, Jacques. Sounds very interesting but also not well supported by the establishment in the US.

I look forward to reading more about it here in the archives.
by mpbser
Thu Oct 03, 2019 12:29 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Do you have experience with CareOncology.com?
Replies: 7
Views: 1280

Re: Do you have experience with CareOncology.com?

Eternal optimist wrote:I have been on the care oncology protocol for just over 2 years, and against the odds became NED about 20 months ago.


That's really awesome. May I ask what treatments Care Oncology has prescribed you?
by mpbser
Thu Oct 03, 2019 10:06 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Rectal cancer (Stage 3A) diagnosed late June 2017
Replies: 1708
Views: 417891

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

I read your comment about clustering. I highly recommend Super Cleanse. I have used it for nearly 30 years (not continually! on and off as needed) and find it to be the best supplement to keep me "regular." http://www.naturessecret.com/products/super-cleanse/
by mpbser
Thu Oct 03, 2019 9:56 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Rectal cancer (Stage 3A) diagnosed late June 2017
Replies: 1708
Views: 417891

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

What's going on with the PMs? Is it a website glitch? I haven't sent any as I haven't been on this site for a while. The derision from the peanut gallery had gotten to be just too much during the spring when my husband and I were going through that hellish life-threatening experience. I definitely n...
by mpbser
Thu Oct 03, 2019 9:22 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Regorafenib + Nivolumab - Immunotherapy might work in MSS CRC
Replies: 74
Views: 17663

Re: Regorafenib + Nivolumab - Immunotherapy might work in MSS CRC

My husband had a consultation at Weill-Cornell the other day and the oncologist mentioned this combination as a possible option should he had any recurrence. He is currently (still) NED, but we want to have a game plan - just in case. (Knocking on wood this is all for naught.)

Time will tell.
by mpbser
Thu Oct 03, 2019 9:11 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Rectal cancer (Stage 3A) diagnosed late June 2017
Replies: 1708
Views: 417891

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

My husband just had his first liquid biopsy (guardant360) on Monday. We get the results in a couple weeks. We are pretty ecstatic about his care these days now that he has a second-opinion oncologist at Weill-Cornell. She is the one who ordered the liquid biopsy.

Good to see you are doing well!
by mpbser
Tue Aug 06, 2019 2:39 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: How crucial is the HAI pump?
Replies: 42
Views: 3673

Re: How crucial is the HAI pump?

There are no Codman pumps remaining at MSK. I know that for a fact.
by mpbser
Mon Jul 29, 2019 4:07 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Stage 4, over 4 years since diagnosis, still NED
Replies: 24
Views: 3819

Re: Stage 4, over 4 years since diagnosis, still NED

Awesome news. You've been an inspiration to me.
by mpbser
Sat Jul 13, 2019 5:12 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: My CRC with liver mets journey
Replies: 344
Views: 73680

Re: My CRC with liver mets journey

Just popping in to say that I caught up with this thread and can completely relate to the work issues you've described. I think Maggie Nell hit the nail on the head with her analysis. My husband's boss feels like a ship without a sail and a fish without water whenever my husband needs to take time o...
by mpbser
Thu Jul 11, 2019 10:53 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Red cell distribution width
Replies: 1
Views: 630

Re: Red cell distribution width

I just read this, which makes me think that the residual scrotal hematoma (STILL hasn't completely resolved!) is causing the RDW to be slightly elevated: hemolysis or blood transfusion can also cause an elevated RDW. But I like to double-check everything -- as stated on another thread, better to be ...

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