Not allowed to do chemo / nervous

Please feel free to read, share your thoughts, your stories and connect with others!
Maelleous
Posts: 125
Joined: Tue Nov 01, 2016 8:13 am
Location: FL

Re: Not allowed to do chemo / nervous

Postby Maelleous » Wed Feb 01, 2017 10:35 am

I would be happy to hear the names Ipas. The cardiologists don't want me on any supplements until after I get my ICD. I was able to get in early (yesterday) to the EP doctor. Apparently once you have Sudden Cardiac Death (I was technically dead for almost 10 minutes I have learned) that your risk, even if caused by chemo, is much higher than a normal person. They are going to install an external defibulator. It goes underneath the skin but does not have wires into the heart so a much safer option and less invasive. I have that scheduled for Feb 28th. I should be able to explore cancer treatment options again after that is done. They pushed it out that far because I still have voice issues from the inhibation tube during the arrest.

I'm meeting with Moffitt tomorrow for a 2nd opinion on options. They want me to meet with a radiologist there, but from what I have learned if you have a j-pouch, it can cause more problems than it is worth.

How soon after surgery did you all get new scans to see if it has shown up anywhere? I think I am getting close to 6 months since my last CT scan.

Thank you for sharing Wandalein. Did he do anything special, diet, supplements, etc? I've been doing my best to eat extremely healthy but also trying to put back on weight which has been difficult.
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

PainInTheAss
Posts: 663
Joined: Tue Jul 02, 2013 3:08 am

Re: Not allowed to do chemo / nervous

Postby PainInTheAss » Fri Feb 03, 2017 7:28 am

Maelleous wrote:Thanks Beans.

I have done a bunch of research on statistics for surgery with chemo and without and I am surprised that the odds of reoccurrence/survival isn't as huge of a difference as I would have expected so that eased my mind a little bit. Yes I would still rather do it and have the peace of mind I did everything possible. I'm scheduling a second opinion with Moffett to see what they say. The oncologist at Cleaveland Clinic told me there were no immonotherapies for NED patients... def need a second opinion.


As a fellow IIIc, please bear in mind that the stats for effectiveness for post surgery chemo are on a sliding scale depending on stage. There is a big difference in effectiveness even from IIIb and IIIc. I'm only saying this for people reading who think it doesn't matter if they skip chemo. It may be statistically insignificant for a IIa, but that doesn't mean it isn't for other stages. My Onc showed me data that Folfox makes a difference of 27% for IIIc based on some study when I was reluctant to do it because of the risk of permanent neuropathy.

Having said that, I found in my own research that many of the the clinical trials where this data comes from includes patients who only completed one round. They count their results with the ones who did all of them. When Foldox started, they used to do 24 rounds, then reduced to 12, then 8, I did 6, and some after me were doing 4... With the same effectiveness. It may be possible that in the near future they will discover that one round is just as effective as 24 was. But it takes quite a while for trials to translate into standard treatment. Some Oncs are still recommending 12. You did three, right? I don't think you need to be aggressive about finding an alternative. Even if you do, I think you're covered.

I'm so glad you survived the cardiac arrart. Who wants to get cancer and die of a heart attack? :-)
47yo single mom of 4 (24, 21, 18, 16) at Dx
6/13 - RC T4b IIIc 5LNs on PET CEA 5.4
8/13 - Finish chemorad
10/13 - APR/hyst+ovaries/perm colostomy 2/12 nodes+
6/14 - Finish Xelox 6 rds
1/15 - CT clear CEA 0.2
10/15 - CT/MRI clear CEA 0.7
4/16 - CT clear
10/16 - CT/MRI clear CEA 0.6
5/17 - PET clear? Follow up MRI to verify inflammation

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

Re: Not allowed to do chemo / nervous

Postby Maelleous » Fri Feb 03, 2017 7:39 am

Thank you for that post Painintheass, I really needed to hear that right now! Got a second opinion from Moffitt yesterday. The doc here was good, but basically said the same thing as Cleveland Clinic - said they met with a panel because my case is rare and unique. Said chemo wouldn't be worth the risk even at a low dose, I could do chemo for lung or liver cancer if I get it possibly down the road since they usually don't have 5-FU. She said I could do radiation, said it would help with local reoccurance by a small amount but would do nothing for lungs or liver mets. She said it would be good if I have no other options, they could do a low dose of a targeted beam that wouldn't destroy my rectum but the risk of other side effects is extremely high (erectile dysfunction, pouchitus, etc and with someone at only 35y/o quality of life would be bad for the risk/benefit) She kind of scared me a lot by saying I have a pretty high risk of reoccurance. I knew that, but still hearing it repeated several times makes you nervous.

They do not have any vaccine clinical trials there but she said I should absolutely do that if I can get into one and told me several other facilities to look into aside from Duke. Gave me a bunch of names, I am going to reach out to as many as I can find today. I unfortunately won't be able to get into one until after I have fully recovered from the surgery on the 28th. I forgot in December I had CT scans post surgery (during the period I have no memory from the cardiac arrest) and they were all clean, so at least I have 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

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

Re: Not allowed to do chemo / nervous

Postby Maelleous » Mon Feb 06, 2017 10:11 am

Flying up to Duke for a consultation at the end of the week after this one. Hopefully I can get something good going!
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

lpas
Posts: 1010
Joined: Wed Nov 19, 2014 11:11 pm

Re: Not allowed to do chemo / nervous

Postby lpas » Mon Feb 06, 2017 4:59 pm

Maelleous wrote:I would be happy to hear the names Ipas. The cardiologists don't want me on any supplements until after I get my ICD. I was able to get in early (yesterday) to the EP doctor. Apparently once you have Sudden Cardiac Death (I was technically dead for almost 10 minutes I have learned) that your risk, even if caused by chemo, is much higher than a normal person. They are going to install an external defibulator. It goes underneath the skin but does not have wires into the heart so a much safer option and less invasive. I have that scheduled for Feb 28th. I should be able to explore cancer treatment options again after that is done. They pushed it out that far because I still have voice issues from the inhibation tube during the arrest.

I'm meeting with Moffitt tomorrow for a 2nd opinion on options. They want me to meet with a radiologist there, but from what I have learned if you have a j-pouch, it can cause more problems than it is worth.

How soon after surgery did you all get new scans to see if it has shown up anywhere? I think I am getting close to 6 months since my last CT scan.

Thank you for sharing Wandalein. Did he do anything special, diet, supplements, etc? I've been doing my best to eat extremely healthy but also trying to put back on weight which has been difficult.


Hi Maelleous,

FYI, I'm currently working with two different NDs, but the primary is Dr. James Belanger in the Boston area. A significant percentage of his patients are long distance and consult with him by phone, so you definitely don't need to travel there to work with him. I've posted a link below, which has contact info and some good background on his approach and philosophy. As some of you know, I also consult with Donald Yance's practice and like them a lot as well (Yance's book, "Herbal Medicine, Healing and Cancer," is fantastic). They're based in Oregon and also do phone consults. Dr. Belanger is a bit more focused on immunology issues and does more immune-specific testing. Here are some links:

http://www.lexingtonnaturalhealth.com/pages/Conditions/Cancer.html
http://mederifoundation.org/become-a-patient/mederi-centre-for-natural-healing/our-care-team.html

Hope this is helpful. Good luck!
11/14 Dx sigmoid CC @ 45yo
12/14 Colectomy + hysterectomy
Stage IIIB, T3N1bM0, 2/20 nodes, MSS, G2, KRAS(A146T), TP53, SMAD4, ERBB2, CEA 1.0
2/15-7/15 XELOX & celecoxib
2/19 clean scope
11/19 clean CT
Ongoing cimetidine & other targeted supplements
Mom to a 6 & 8yo


Return to “Colon Talk - Colon cancer (colorectal cancer) support forum”



Who is online

Users browsing this forum: No registered users and 4 guests