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trouble eating and swallowing

Blueskies911
Posts: 3
Joined: Mar 2018

Hi all

I am new to this group. I am going to be 60 next month and have been very much a 'glass half full' person. I usually find humor in even the darkest of days, but lately been having trouble remaining positive with chronic pain and chemo symptoms. I also have lupus, which complicates everything.   I was diagnosed w/ stage 4 colon cancer late in 2013.  Since my surgery, chemo and radiation treatment in 2014 I have had tons of late effects, including necrosis in both hip joints, and a weird rare infection in my spine. I was able to have a temporary hip replacement last summer, but was unable to get the permanent joint as the cancer showed back up in both lungs, and in my lymph system.  After one recipe of Folfox(I am probably writing this wrong) , which reduced my markers but just about did me in, my oncologist put me back on Folfiri plus Avastin and a Neulasta shot.   I can't have radiation because of the location of the lymph nodes in relation to my lungs. I have wonderful friends and family, but I don't think that they get how hard it is to be back on chemo, which my oncologist has told me will be for the rest of my time.  While I am glad that I don't know anyone in my shoes right now (I would wish this on nobody!) , I feel isolated and discouraged.  Currently I am 3 days out from my 3 day concotion (Folfiri, avastin and neulasta) and I am having trouble swallowing.  I feel like I have a boulder in my throat, and am having pain between my shoulder blades that makes sleeping difficult.  I am wondering if anyone else has had this swallowing problem? I guess being bald is the least of my worries!

Anyway, I decided to reach out to see if it would help adjust my attitude.  I am grateful to alive...mostly!

Thanks for listening, and any feed back MUCH appreciated!

Trubrit's picture
Trubrit
Posts: 5216
Joined: Jan 2013

I experienced the very same sensation. My Oncologist told me it just felt like a blockage, but that it was not really there.  For me, it was in my throat and then again by the breast bone. It felt like a huge lump, stopping the food from decending. Thankfully, it went away after a few weeks, even before chemo ended, I believe - yes, I am one of the lucky ones, enjoying NED with chemo behind me - 

I hope you grasp our little forum with both hands, because we can help you not feel so alone. So many (sadly) of us here, fighting the fight, or standing by the side of our loved ones fighting. We're all here to help you get through this and come out the other end, singing. 

There are a few here who, like you are on the chemo for life, thing. They will be along soon, to rally you with their love and support. 

As I told a new friend on the forum, earlier today. You are allowed to feel discouraged. Its a heavy load you're asked to carry at this time. But, don't let the load weigh you down and bury you. Keep that chin above water, and take our hand, we'll lift your up, along with those who are physically there to support you. 

Tru

Blueskies911
Posts: 3
Joined: Mar 2018

wow, Thank you so much for your response.  I am not very good with computers and could not figure out how to get back into this forum! I am glad I kept trying!  I have now doubled my Prilosec, and am on maximum dosage.  It has not really helped significantly, but it could eventually.  I think it helped to reach out- I am feeling more hopeful.  I feel weak from not being able to eat much, but am trying to embrace protein drinks.yum, lol!   Ha ha, I used to worry about chubby!  I know that it will be best to focus on what I can do- it seems like I feel decent about half the time between chemo treatments- that's something! I am trying to plan things that lift me up during these times, which includes doing things to help others.  It will take time to adjust to this 'new normal', but I don't want to give chronic pain the upper hand if I can help it.  Kindness rocks!

 

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

Welcome! Chemo is crappy, it just is. I'm one who will be on it for life, probably twice a year. I just went back on it on Friday. You sound like you've had a pretty rough go, it's hard to stay positive when things are like that. It's okay to be down sometimes. I think it's easier to get through if you allow yourself that indulgence sometimes. Just make sure to get back on track again.

Jan

SandiaBuddy's picture
SandiaBuddy
Posts: 1099
Joined: Apr 2017

Sorry to hear of your circumstance.  For the swallowing, you might try a PPI like prilosec, or Cimetadine, which has some anti-cancer effects.  I have found that some foods (like rice and meat and sometimes nuts,) give me swallowing difficulties.  You might want to see if any foods tend to help or hurt the condition.  For sleeping, you might try 20mg of melatonin, which also lessens some of the side effects of chemo and has a distinctive anti-cancer effect (search old posts for cites on both these supplements).  So sorry about your circumstances.

ThomasH's picture
ThomasH
Posts: 100
Joined: Jun 2016

I'm completely on board with the anti-cancer effect of melatonin, it is a really powerful anti-oxidant. I take my 20mg nightly and it helps me sleep.

My word on caution is that some of the stuff in FOLFOX is a powerful oxidant according to my onc, so they told me to steer clear of the melatonin while I was on that type of chemo because it would inhibit the chemo to some degree.

You might want to double check with your onc or pharmacist just to make sure that what you are taking isn't going to have a problem with the melatonin.

Sorry to butt in on your comment Sandia, just thought I would share.

Thomas

SandiaBuddy's picture
SandiaBuddy
Posts: 1099
Joined: Apr 2017

No problem, Thomas, being cautious is always good.  My recollection is that melatonin was particullary effective in conjunction with chemo.  Here are a few notes from my research log, I have not re-researched this because I am off chemo (at least for now).

20 mg melatonin plus chemo, improved the complete and partial remission (16.5 vs. 32.6%; RR = 1.95, 95% CI, 1.49-2.54; P < 0.00001) as well as 1-year survival rate (28.4 vs. 52.2%; RR = 1.90; 95% CI, 1.28-2.83; P = 0.001), and dramatically decreased radiochemotherapy-related side effects
https://www.ncbi.nlm.nih.gov/pubmed/22271210

In trials combining MLT with chemotherapy, adjuvant MLT decreased 1-year mortality (RR = 0.60; 95% CI = 0.54-0.67) and improved outcomes of complete response, partial response, and stable disease; pooled RRs were 2.53 (1.36-4.71), 1.70 (1.37-2.12), and 1.15 (1.00-1.33), respectively. In these studies, MLT also significantly reduced asthenia, leucopenia, nausea and vomiting, hypotension, and thrombocytopenia. http://journals.sagepub.com/doi/pdf/10.1177/1534735411425484

Annabelle41415's picture
Annabelle41415
Posts: 6545
Joined: Feb 2009

Welcome to the board and sorry that you are here.  I'm glad that other's have already commented and given you some suggestions.  Sometimes the treatment can be hard on the stomach and give indigestion which you should alert your doctor too.  There are some medications you can take, but they need to be sure it is something not more serious.  I've also had two hip replacements due to the radiation and chemo done to my hips.  Please let your doctor know of these symptoms and hope you feel better soon.

Kim

Mikenh's picture
Mikenh
Posts: 777
Joined: Oct 2017

Standard stuff for Oxaliplatin. I avoid cold food, drinks, and air for two weeks after the Oxaliplatin goes in. Then I get a week of relief.

James_B
Posts: 14
Joined: Feb 2018

wear glove and sock keep warm, warm water is good for you. watch out for hot stuff, you sense might be slower reaching you brian. 
Keep positive.  
 

James_B
Posts: 14
Joined: Feb 2018

To Blueskies911 
Really sorry what happend to you. You've gone though hell lot compairing to me! 
I don't have the same side effect that you have, guess difference people respond differenly, I've Oxaliplatin (infusion) and Capecitabine (oral) treatment for nearly half year, the trament fail.  The Doc's told me for further treatment, but I think the persenctage of recovering is pretty low, so… I refuese the treament (stage 4++). That is in Jan 2018 Doc told me I got around 6 month more or less. Any way I just give you the GOOD NEWS, and… 
I STILL HAVE MY HAIR ! :) (Don't ask me why, I can't answer that). 

Blueskies911
Posts: 3
Joined: Mar 2018

I am hoping that you are not too uncomfortable, and that you have some love and support around you.  I totally understand your choice of refusing treatment.  Nobody knows how each one of us feels from the inside out.  I have thought quite a bit about refusing treatment- I am going to give current chemo a good try, but we'll see if it works.  So far things are not getting worse, but not getting better.  I haven't really gone on the extreme diet thing but some people I know are using a ketogenic diet to make their bodies less hospitable for cancer. I have a friend that was given 2 months to ive and here she is 14 months later, not great, but still here.  

I wish you every blessing.  Thanks for sharing, and I am glad you have hair!

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