Page 38 of 118

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

Posted: Thu Dec 28, 2017 9:26 am
by NHMike
That was brisk. I had cold sensitivity in my feet and fingers, especially the feet. But that should happen in these temperatures. The rest of me was fine though. I should post a picture of my cold weather outfit.

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

Posted: Fri Dec 29, 2017 9:02 am
by heiders33
Thanks for the tip on electrolytes. I have been taking magnesium supplements and drank a Gatorade the day before infusion and Pedialyte the day of. I believe that is directly connected to my not experiencing hand or leg cramping this time around. I have a little stiffness in my fingers, but nothing as bad as previous rounds. I also don't really have first bite pain this time, just mild discomfort. Amazing!

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

Posted: Fri Dec 29, 2017 9:25 am
by NHMike
heiders33 wrote:Thanks for the tip on electrolytes. I have been taking magnesium supplements and drank a Gatorade the day before infusion and Pedialyte the day of. I believe that is directly connected to my not experiencing hand or leg cramping this time around. I have a little stiffness in my fingers, but nothing as bad as previous rounds. I also don't really have first bite pain this time, just mild discomfort. Amazing!


I'll add a calendar entry to increase electrolytes before my next infusion. I'm not sure what form they will take but I'll look for low sugar options.

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

Posted: Fri Dec 29, 2017 11:31 am
by heiders33
Yes, I meant to add that it was a low sugar Gatorade that I drank.

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

Posted: Fri Dec 29, 2017 11:16 pm
by rockhound
heiders33 wrote:Yes, I meant to add that it was a low sugar Gatorade that I drank.


Gatorade G2 was what I drank - low sugar

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

Posted: Sat Dec 30, 2017 11:01 am
by NHMike
I finally have some down time to take a look at the Coloplast literature. It looks like they gave me 3 cut-to-fit one-piece, and 4 convex one-piece models. Two of the convex models are 1 5/16 and two are a bit bigger than 1 3/8. My guess is that the WOC Nurse asked for 1 1/4 with a 1 3/4 flange (what I use in Convatec) and, they sent the two sizes because the Mios don't have flanges. I can cut the convex models to fit though the 1 3/8 might be a tad big. The Coloplast Mios look a little more luxurious than the Convatec Naturas that I have been using.

I have their literature in my bag and plan to review it today. I have plenty of the Convatec Natura cut-to-fit and am waiting for an order of Convatec Natura Convex. for December. The Convex works really well in terms of protecting the skin. I do look forward to trying the Mios as well. I can use the regular Convatecs in a pinch of the Convex takes a while to arrive.

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

Posted: Sat Dec 30, 2017 7:16 pm
by NHMike
I slacked off the past three days on exercise due to the cold and having to take care of a lot of errands. Today I went to the gym and worked out on the weight machines. This is the first time that I've used them since I got the port installed two weeks ago and it was nice to do a little strength-training again. I noticed that I had to be careful with some of the machines because there's a pad against the chest that supports your body and I had to be careful that the pad wasn't on the chest port. I've already figured out how to replicate those exercises using free weights or a Smith Machine so that I don't need to put pressure on my chest.

I looked at some of the bodyweight structures (dip, roman chair, pullups) and decided that it's too early to do full bodyweight at this time. I will continue to go slowly but I suspect that my body can handle a lot more now than it could do a month ago.

Also got in a 2.5 mile walk on the treadmill at a fairly good pace and 5 miles overall. I'd love to do this every day but getting to the gym in the cold weather takes a bit of effort. I can walk outside in the very cold weather for about 10-15 minutes but I feel like an icicle when I get back inside.

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

Posted: Sat Dec 30, 2017 11:20 pm
by rachel2017
[quote="NHMike"] I've also read that chemo can spread cancer in a recent article - it doesn't spread it itself but the mechanism may make it more likely to spread.


hey, Mike, could you please give me the link of the article you read that says chemo can spread the cancer. My mom is very unlucky and her cancer had been spread aggressively after the chemo. We went to three cancer center and all the drs denied the chemo spread my mom's cancer. I would like to read the article and show the drs. Thanks a lot!

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

Posted: Sat Dec 30, 2017 11:58 pm
by NHMike
rachel2017 wrote:
NHMike wrote: I've also read that chemo can spread cancer in a recent article - it doesn't spread it itself but the mechanism may make it more likely to spread.


hey, Mike, could you please give me the link of the article you read that says chemo can spread the cancer. My mom is very unlucky and her cancer had been spread aggressively after the chemo. We went to three cancer center and all the drs denied the chemo spread my mom's cancer. I would like to read the article and show the drs. Thanks a lot!


There were a bunch of articles on this this past summer. Here's an example: http://www.telegraph.co.uk/science/2017 ... ours-warn/

I didn't search for the original papers on this though.

There's another potential behavior where chemo kills all but the strongest mutations which leaves them more room to grow. That was in a paper on BRAF I think; but I didn't save it.

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

Posted: Sun Dec 31, 2017 10:38 am
by veckon
rachel2017 wrote:
NHMike wrote: I've also read that chemo can spread cancer in a recent article - it doesn't spread it itself but the mechanism may make it more likely to spread.


hey, Mike, could you please give me the link of the article you read that says chemo can spread the cancer. My mom is very unlucky and her cancer had been spread aggressively after the chemo. We went to three cancer center and all the drs denied the chemo spread my mom's cancer. I would like to read the article and show the drs. Thanks a lot!


The source study linked in the article is this: http://stm.sciencemag.org/content/9/397/eaan0026

If you actually read the paper (and note the errata) you will see how their research DOES NOT generalize from the specific genetics of the breast cancer they studied in combination with the specific chemotherapy drugs used.

"Chemotherapy" is a GENERAL term for a broad class of drugs used to treat cancer in a similar manner. The chemotherapy drugs used to treat colon cancer are TOTALLY AND COMPLETELY UNRELATED to the drugs used to treat breast cancer in the study.

It might be hard to accept, but we (doctors, scientists, teachers, random people on the street) don't know everything. Science is a continual, ongoing process of revising knowledge methodically over time.

The Telegram article is complete FUD.

Have you considered the possibility that your mother's cancer is just not responding to the treatment (a percent of people do not respond at all)? If not, why did you default to blaming the chemo and NOT the cancer itself? Cancer literally is the unbridled, uncontrolled, malignant reproduction of cells. Chemotherapy is not magic, cancer treatment is not magic, and we have LARGE gaps in our understanding of everything. But what if this FUD turns away even one person whose tumors could have responded to treatment?

BTW: I hated chemo.

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

Posted: Sun Dec 31, 2017 6:29 pm
by rachel2017
veckon wrote:
rachel2017 wrote:
NHMike wrote: I've also read that chemo can spread cancer in a recent article - it doesn't spread it itself but the mechanism may make it more likely to spread.


hey, Mike, could you please give me the link of the article you read that says chemo can spread the cancer. My mom is very unlucky and her cancer had been spread aggressively after the chemo. We went to three cancer center and all the drs denied the chemo spread my mom's cancer. I would like to read the article and show the drs. Thanks a lot!


The source study linked in the article is this: http://stm.sciencemag.org/content/9/397/eaan0026

If you actually read the paper (and note the errata) you will see how their research DOES NOT generalize from the specific genetics of the breast cancer they studied in combination with the specific chemotherapy drugs used.

"Chemotherapy" is a GENERAL term for a broad class of drugs used to treat cancer in a similar manner. The chemotherapy drugs used to treat colon cancer are TOTALLY AND COMPLETELY UNRELATED to the drugs used to treat breast cancer in the study.

It might be hard to accept, but we (doctors, scientists, teachers, random people on the street) don't know everything. Science is a continual, ongoing process of revising knowledge methodically over time.

The Telegram article is complete FUD.

Have you considered the possibility that your mother's cancer is just not responding to the treatment (a percent of people do not respond at all)? If not, why did you default to blaming the chemo and NOT the cancer itself? Cancer literally is the unbridled, uncontrolled, malignant reproduction of cells. Chemotherapy is not magic, cancer treatment is not magic, and we have LARGE gaps in our understanding of everything. But what if this FUD turns away even one person whose tumors could have responded to treatment?

BTW: I hated chemo.

Veckon, thanks for sharing the link. I never blame chemo and I know chemo helps a lot of people. But we are the one with very bad luck. I also know some people won’t response to the chemo, so during the chemo the tumor can grow. However, in our case, the cancer grows very aggressively during the chemo. Before the chemo, my mom had waited for two months. During the waiting time, we did CT scan, and then Pet scan in one month later. The two scans didn’t show too much difference. She had two smalls localized met on her periotoneal. One area if 1.4cm and the other area is 0.9cm. The cancer board team’s original plan was giving her 8 chemo and then surgery plus HIPEC, and 4 more chemo after the surgery. The surgeon told me it is lucky that she just has localized met. After 4 chemo( within two months), she had another CT scan and it reviewed that she start to have ascites. Diffuse confluent and matted nodular densities throughout the greater omentum and peritoneal cavity in the abdomen and pelvis. The 1.4cm grew to 7cm and the 0.9cm grew to 5.7cm. however, basing on my mom’s CEA dropped a little bit, the doctor think the chemo is effective and she just added avastin. We went to two other cancer centers and got no answers as well.
Happy new year and wish you will have a good luck for your immunotherapy

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

Posted: Sun Dec 31, 2017 6:45 pm
by rachel2017
NHMike wrote:
rachel2017 wrote:
NHMike wrote: I've also read that chemo can spread cancer in a recent article - it doesn't spread it itself but the mechanism may make it more likely to spread.


hey, Mike, could you please give me the link of the article you read that says chemo can spread the cancer. My mom is very unlucky and her cancer had been spread aggressively after the chemo. We went to three cancer center and all the drs denied the chemo spread my mom's cancer. I would like to read the article and show the drs. Thanks a lot!


There were a bunch of articles on this this past summer. Here's an example: http://www.telegraph.co.uk/science/2017 ... ours-warn/

I didn't search for the original papers on this though.

There's another potential behavior where chemo kills all but the strongest mutations which leaves them more room to grow. That was in a paper on BRAF I think; but I didn't save it.


Hey, Michael, thanks a lot! I did hear from different doctors that my mom’s cancer behaves either like BRAF mutation or high grade carcinoma. Since my mom has low grade carcinoma that is KRAS G12D. I questioned the doctors about the biopsy results. One doctor said since KRAS and BRAF mutation in the same chain(?forgot the original words), so if the testing show we have KRAS and usually we don’t have BRAF. Also my mom is MSS. I am not sure whether we should repeat this testing as well. Since my mom had biopsies twice. And they all showed she has a low-grade carcinoma. I am doubt about the results. I ask the doctor I would like to have a pano genetic testing done; however, the doctor recommended we should wait till the progression since the cancer may mutate.

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

Posted: Sun Dec 31, 2017 6:50 pm
by NHMike
Did you look at Tumor Infiltrating Lymphocytes Therapy at NCI?

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

Posted: Sun Dec 31, 2017 8:27 pm
by rachel2017
NHMike wrote:Did you look at Tumor Infiltrating Lymphocytes Therapy at NCI?

yep, we did. Since the tumor shrink a little after she had the avastin. We are not qualify for the screening yet.

The cancer behaves weird, I always wonder is there a way she can get the diagnostic from NCI? I wish some doctors can figure out what's happen in her case that can benefit to my mom and other people in future. I called NCI two month ago; however, a lady answered my call said "no".

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

Posted: Sun Dec 31, 2017 8:51 pm
by NHMike
rachel2017 wrote:
NHMike wrote:Did you look at Tumor Infiltrating Lymphocytes Therapy at NCI?

yep, we did. Since the tumor shrink a little after she had the avastin. We are not qualify for the screening yet.

The cancer behaves weird, I always wonder is there a way she can get the diagnostic from NCI? I wish some doctors can figure out what's happen in her case that can benefit to my mom and other people in future. I called NCI two month ago; however, a lady answered my call said "no".


I noticed the MD Anderson is doing clinical trials of TIL therapy and am hoping that the NCI stuff gets pushed out to the major cancer centers so that more people can benefit.