The Colon Club

NHMike wrote:

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.

Thanks for the information! We are within 15 miles from NCI medical clinic. I am worry too much and worry about everything. Now, it looks like the avastin is working; however, I worry if she on avastin for a long time and she will lose the chance to be operated.

I don't think it's unreasonable to be worried when this is the case: 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.

That sounds like a very specious conclusion by this doctor. Your mother is lucky to have you.

Dana Farber Cancer Institute: Tips for Managing Neuropathy

How can cancer patients cope with the symptoms of neuropathy? Clare Sullivan, MPH, BSN, CRRN, hosted a live chat on chemotherapy-induced peripheral neuropathy (CIPN). Sullivan, who is the clinical program manager for Patient Education at Dana-Farber, answered questions about prevention, safety, and managing side effects. A transcript of the chat follows:

http://www.dana-farber.org/health-libra ... opathychat

I did a quick skim and it looks useful. This is something that I'm going to go through tonight and just wanted to save the link here and provide it for anyone else interested.

NHMike wrote:.... I'm a big advocate of core training as it helps to prevent injuries as we age and it can help to avoid muscle imbalances that result in repetitive stress injuries. A strong core might even help with surgical recovery.

If you haven't done so already, you might want to read Chris Ganser's blog post on core exercises. Like you, Chris is a Stage III cancer survivor. In 2015 he was featured as a Colondar Model. This year, in March, Chris will again be attending Call on Congress in Washington DC.

Core Recovery
https://mycanceredlifeblog.wordpress.com/2016/11/15/core-recovery/

O Stoma Mia wrote:

NHMike wrote:.... I'm a big advocate of core training as it helps to prevent injuries as we age and it can help to avoid muscle imbalances that result in repetitive stress injuries. A strong core might even help with surgical recovery.

If you haven't done so already, you might want to read Chris Ganser's blog post on core exercises. Like you, Chris is a Stage III cancer survivor. In 2015 he was featured as a Colondar Model. This year, in March, Chris will again be attending Call on Congress in Washington DC.

Core Recovery
https://mycanceredlifeblog.wordpress.com/2016/11/15/core-recovery/

Bookmarked. I took a quick skim and it looks good. I've done a couple of freeweight workouts in the hotel gym (not a lot of options). I just climbed 10 flights of stairs and got the heartrate up to 150 so maybe I should take the stairs more often. There's a convention here and the elevators are really slow.

O Stoma Mia wrote:

NHMike wrote:.... I'm a big advocate of core training as it helps to prevent injuries as we age and it can help to avoid muscle imbalances that result in repetitive stress injuries. A strong core might even help with surgical recovery.

If you haven't done so already, you might want to read Chris Ganser's blog post on core exercises. Like you, Chris is a Stage III cancer survivor. In 2015 he was featured as a Colondar Model. This year, in March, Chris will again be attending Call on Congress in Washington DC.

Core Recovery
https://mycanceredlifeblog.wordpress.com/2016/11/15/core-recovery/

You're the first person that has called me a "survivor". I haven't considered myself in that category yet; maybe after Adjuvant Chemo.

Hey, NHMike, I just saw that the $500+ billion Powerball winner is from NH—any chances you’re the lucky player???

No, I don’t buy lottery tickets.

I asked McKesson to ship my ostomy supplies to my office as I was away but they shipped them to my home and left them at the front door. It's been as cold as -15 degrees at home in the past week. Will the Ostomy products be damaged by the severe cold?

I'm amazed that many of the companies that I've dealt with lately have been really dropping the ball on execution lately. I really do not like the idea of spending an hour on the phone with them dealing with this and doing a potential return of products and waiting for more to be shipped out.

I called McKesson and they saw what happened - that it got shipped to my home address, but that it was supposed to go to my office address. So they will put in a replacement order. I've been trying to get an order through since around December 20 and there have been a series of problems related to execution that's hard for me to understand. I can understand folks wanting a decent amount of supplies in case there are ordering issues that last a few weeks. As it is, my December allocation is toast as it got pushed into January. So I'm running on samples right now and hope that this order arrives before I have to use the Mios (I don't like trying new products under pressure).

NHMike wrote:I called McKesson and they saw what happened - that it got shipped to my home address, but that it was supposed to go to my office address. So they will put in a replacement order. I've been trying to get an order through since around December 20 and there have been a series of problems related to execution that's hard for me to understand. I can understand folks wanting a decent amount of supplies in case there are ordering issues that last a few weeks. As it is, my December allocation is toast as it got pushed into January. So I'm running on samples right now and hope that this order arrives before I have to use the Mios (I don't like trying new products under pressure).

I use Byram which is located on the West coast and have come to the end of the supply line before. It was very stressful being in the situation you're in. I called my insurance company and requested an increase in supply allotment which they initially declined. The medical coordinator at my oncologist's office was able to get them to double my allotment based on necessity which she described as "increased output due to chemo induced diarrhea" which was an issue for me at the time. I was able to create an emergency back up supply when output settled down which is very reassuring. Maybe you can request extra based on chemo induced increased output as well?

Shana wrote:
I use Byram which is located on the West coast and have come to the end of the supply line before. It was very stressful being in the situation you're in. I called my insurance company and requested an increase in supply allotment which they initially declined. The medical coordinator at my oncologist's office was able to get them to double my allotment based on necessity which she described as "increased output due to chemo induced diarrhea" which was an issue for me at the time. I was able to create an emergency back up supply when output settled down which is very reassuring. Maybe you can request extra based on chemo induced increased output as well?

I just need one order of 20 which will last me 80 days. Then I can request monthly without worrying. Even if it takes an additional month. I was considering just ordering from Amazon and paying out of pocket as I did for the Cavilon Spray and the Stomahesive Powder for a pack of 10.

I've ordered from Amazon before too. The hassle free experience offsets the out of pocket cost for me on occasion.

Just back from a trip to DC and it's my first trip since surgery so I had to manage the Illeostomy and I had to change the bag once. I brought three bags with me, the one that works really well (Convatec Convex), a Convatec Flat and a Coloplast Mio which I don't know how to use. So I had two backups in case I had a problem. I also carried one in my backpack and the other two in my small bag in case I lost one.

We took Amtrak as I didn't want to deal with the TSA and my port and appliance which turned out to be a good decision because of the weather problems on the East Coast. Amtrak was pretty simple going as there were plenty of bathrooms and they were functional and the train didn't have a lot of people on it. Coming back, it was more difficult because many of the bathrooms were locked (out-of-order I assume) and the few that were open didn't have toilet paper. I noticed that the bathrooms in Union Station weren't in great shape. Many didn't have functional locking mechanisms and many didn't have toilet paper dispensers. That is they were broken off and removed. So I always bring my own when traveling and that worked out.

I was fairly exhausted last night and assessed the amount of work to deal with snow and ice and went to bed. Carrying luggage all over the place and lifting it up and taking it down was a lot of work. I got up at 8, did a little work clearing snow and icicles off the roof, dug out a car, took a shower and went to work. So I'm physically tired but mentally in good shape. Now I need to take care of paperwork and house chores tonight to catch up.

For what it's worth, I flew down to Texas at Christmas and had no problems with the TSA over my port and pouch. I went through the body scanner and then they patted me down. I informed them that I have an ostomy pouch, so they avoided that area during their pat down. They asked me to rub my hand over my ostomy pouch, outside my clothes, then they swabbed my hands. They couldn't have cared less about my port.