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In remission after a year

Bill1958's picture
Bill1958
Posts: 62
Joined: Feb 2018

Hi everybody.  I had my blood work, cat scan, and follow-up and find I am still in complete remission.  I just wanted to share some good news.  I am really hoping others find good news at every corner they come to with this terrible monster.  I am so thankful.  I still have many unanswered questions as to to origins and final remission of the cancer.  One question I still have is if I had dlbcl and was treated for that, why did some of my other problems repair or disappear.  For example,  for decades I have had stomach aches and would pretty much have to vomit to feel better and this problem is completely gone aafter my treatments.  There is some more but I will hold off as it may be a bit confusing and strange.  But it is true.  

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3295
Joined: May 2012

Great news, Bill.  May it be NED forever.

I had that odd vomit-for-relief problem throughout chemo.   It ended up being due to stomach acid.   I woulld have horrible coughing episodes, and would cough until involuntary vomiting, and then feel fine -- cough ended.  I wondered what on earth could link vomiting to coughing.   The chemo had sensitized my lungs, to where they could less endure irritation.  Stomach acids/GERD emits fumes, which we partially breath as they escape.  That triggers the coughing.   It persists until vomiting.  Because vomiting lowers the amount of acid in the GI trac, the irritation lowers, and the coughing stops.

I was tested by a pulmonologist for fibrosis after chemo, and he knew immediately what the problem had been.  He doubled my Nexium dose, and no problems since.  The pulmonologist also told me that any cough that begins as a 'tickle' in the back of the throat is always caused from stomach gases, and he stressed always.

I know that your episodes do not mention breathing or coughing issues, and GERD may not have been yor issue, but it is something to be aware of, and is a common issue for many,

max

Scubamom for two's picture
Scubamom for two
Posts: 19
Joined: Apr 2018

First, congrats on your Remission!  After reading your post, I found myself wondering if the incidental benefit of the cancer treatments of no longer experiencing stomach problems could possibly have anything to do with the harsh chemo treatments harming all fast-growing cells, including those in your stomach lining?  Maybe, you have a new stomach lining now?  I am not a medical professional, so this is just an uneducated hypothesis.  I know that our fast-growing cells in our body are also attacked by the chemo regimen, so maybe when the body regenerates new ones, those are healthier.  Anyway, here's to hoping you remain in Remission!  I just reached the 1-1/2 yr NED milestone after a diagnosis of DLBCL and 6 rounds of DA-R-EPOCH, 11 IT chemo infusions, and 2 consolidation rounds of High Dose Methotrexate!

Stay Strong!

Diane

Almost70now's picture
Almost70now
Posts: 27
Joined: May 2019

Hi Bill,

  That is very good news and I'm so happy for you. About 4 years ago I started having stomach issues and ended up needing surgery to open my pylori muscle. For unknown reasons it just closed shut. After my surgery I went on Prylosec once a day and haven't had any issues with heart burn or upset stomach. I think our treatments do cause some strange issues down the road, but after all, chemo kills good cells along with the bad, so who knows what it kills off that comes back to haunt us long after we finish our treatments. I just tackle one issue at a time, and try not to speculate on the "why" part. I too am in remission and right now I just try to focus my thoughts on that and pray it continues. best wishes...Sue

FNHL-stage3-typeA...diagnosed June 2010.

PeprmntPat55's picture
PeprmntPat55
Posts: 59
Joined: Aug 2016

So glad to hear you are still in remission! That's great news, what a feeling!   For years, I experienced debilitating migraine headaches. They came at least once a month and lasted anywhere from 3-5 days.  I took prophylactic medications in addition to medication for onset and also tylenol with codeine.   While going through chemo and Rituxan, my migraines disappeared!   I have had a couple of headaches in the last three years but no migraines and nothing requiring anything stronger than OTC Tylenol.  I don't know why this is and honestly dont care! Just glad I'm no longer sufferring!

Wishing you the best!

Bill1958's picture
Bill1958
Posts: 62
Joined: Feb 2018

Thanks everybody.  I. too, believe my stomach issues became better because of the renewal of cells after chemo ScubaMom.  And I am really glad.  When the unknown is good it is probably best to leave well enough alone.  Thanks and may remission, NED and cure be words to live by for all of us!

Evarista
Posts: 261
Joined: May 2017

I too had a medical issue that resolved with my chemo.  My completely non-professional explanation is that the high-dose steroids in R-EPOCH knocked out whatever inflammatory mechanism was causing or contributing to the issue.  This was a severe chronic cough, so violent that I was vomiting a significant portion of my food intake.  Apparently, not a unusual occurrence in the over-65 crowd.  The treatment drill for that seems to be:  nasal anti-histamines, oral anti-histamines, PPI in concert (in case it's GERD related), and if none of those work, steroids.  I believe that the next line of treatment that my GP had in line for me would have been steroids, but at a much lower dose than with chemo.  

Glad everyone is doing so well!  

lindary's picture
lindary
Posts: 652
Joined: Mar 2015

Congratulations Bill. Now that you mention it, I have IBS. It was really bad about 15 years ago but I could count on having 2 - 3 attacks a year. I have had 1 or 2 since the cancer but I couldn't tell you when. I did not have a problem with vomiting but was having heartburn. That is definitley gone. Nice to think the treaments we got took care of problems beyond the cancer. 

yesyes2
Posts: 584
Joined: Jul 2009

Congratulations Bill on completing treatment and being in NED.  A great place to be.  I don't recall my RCHOP having an effect on me beyond the usual badness.  But in 1992/93 I was treated for stage 2 breast cancer with CMF chemo and radiation.  During chemo my thyroid pretty much stopped working and it took months for my body to clear the chemo drugs.  One of the after effects of that was I had previously had an allergy to all things strawberry with a rash and itching.  After chemo and to this date I am no longer allergic to strawberries.  However during chemo I had a very strong reaction to adhesives of any kind.  I would blister, burn and skin would pull off even with a bandaid.  27 years later I still can not use any adhesives without getting a skin burn.

po18guy
Posts: 995
Joined: Nov 2011

Certainly anything is possible. I remember reading the 'New York City phone book" litany of side efects from transplant. Oh, some usual GvHD issues showed up all right. But, the truth is, my colon works better and more regularly than it ever has. We take what we can get, right?

Bill1958's picture
Bill1958
Posts: 62
Joined: Feb 2018

That is sort of the way it is going for me with these awesomely good side affects. It is good to hear others have reaped some benefits from all THIS.

 

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