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skipping chemo treatments at times

Posts: 1
Joined: Sep 2021

I was told early April 2021  I had stage 2.B H.L   When I was told this I did not know enough to ask questions.   I later did lots of google research.   I had 4 chemo dates (two in April and 2 in May).  I hated the needles and was about to stop all treatments and just die.  I hated needles that much.    I googled and found it was okay to take a vacation from it at times as it would not cause any harm.  The chemo still was working.  I skipped the two chemo dates in June and had the planned pet test done.  Result was the pet scan test showed tumor was reduced  down 75% leaving only 25% left.  This figured to be 1/4 and 1/8 reduction of the tumor for each month.      I figured  the sceduled July chemo dates would be enough to wipe the tumor out.       I declined the August chemo dates the doctor added afer the fact  as didn't think it was necessary.  


I really hated the chemo treatments.     I was referred to the radiation (x) doctor mid August.   I had the pet test done on September 1st.   The new result showed NED, no evidence of disease, hence no tumor cells present to warrant further treatment.   I opted to go back to former chemo doctor for followup care, whatever that involves.    The radiation doctor is sending me back to my chemo doctor and regular doctor for followup care.  


  I do have water buildup on the lungs yet that is not related to the tumor--why, is unknown.   I have had the water drained off the right lung twice and now the water is coming back into the left lung.     I might have to have that drained out before the end of the  year while insurance covers it 100% if the quantity of water is such it causes breathing issues.    I will play that by ear.  


   The radiation (X) doctor despite there being no tumor cells on the recent pet scan still wanted me to have X therapy for 4 weeks and go through all the side effects of it just to get what she perceives to be invisible cancer cells on the xray.    It was acknowledged that a pet test and other tests are not able to pick up microscopic cellls and doctors have to guess at them.      I acknowledge that there may be some unseen cells there yet they are not shown on the pet test.  I truly believe the tumor is gone though my doctors are not of the same opinion.


     If the tumor comes back, since I only had 6 chemo dates to get ride of the tumor cells, I still have about 6 chemo datesI think  I could possibly use if the chemo effect had not maxed out.        


  Originally I said I would do X therapy yet no chemo.  Yet due to the neck swelling inward on the right side slowlyl strangling my breathing and makinig swallowing hard and drinking out a straw really difficult, I opted for 4 chemo dates to get a quality of life back.  


  The IV needle was about to kill me after two treatments.    By the end of June my chemo doctor gave me a cream pain kililer to put on the skin prior to the IV to lessen the pain.  If I had had cream after the first April chemo date, I might have gone for more chemos than I did yet six chemos was adequate to get rid of the tumor.    


I have gotten most of my taste bud back and starting to gain some weight.        Why would I choose X therapy and accept all the side affects when there was no tumor cells showing up on this latest pet scan test?    The X doctor was not happy yet she said it was my decision.       


I recently turned 65.   I still work full time as a secretary. 


  I had no big side effects from the chemo other than taste lost, food tasting funny and had no nausea issues as Ii was just careful about when and how I ate after a chemo treatment.       In the future I would prefer chemo over radiation therapy at all costs if the tumor comes back or just take maint chemo to keep the tumor at bay and give me some quality of life and live and work and pay off my medical bills.   I realize that if this comes about and I still decline radiation therapy I could ulitmately die.  .   The side effects of potential X is not for me and would not be a quality of life I would want to endure.  X would have to be a last resort option and only if I want the full kitchen sink treatment.


From research, regardless whether one gets tumor free from gold or silver or bronze medal treatment, there is no guarantee that cancer treatment can capture every stray cell in the body.   Tumors willl come back even with gold treatment or if one has radiation therapy.    


I did not follow my chemo doctor's gold standard of treatment.   I took the silver medal treatment route, and did it my way.     


   I have not heard from the doctors as to how they want to do followup--from my main doctor or from the chemo cancer doctor.    They are to contact me I believe, not the other way around.  


Yet I will consider contacting one of them about the lung water buildup by end of November if the breathing is becoming an issue by then.    I am hoping the water will stop buildiing in my lungs and that the partly collapsed lung willl get better on its own. Why the lung collapsed I don't know. 


If I had not had such a great rate of return with the chemo and knockinig out 75% of the tumor in two months followed by a month of rest in June, I would likely have taken more chemo than I did.      I tried to get my chemo doctor to get the pet test done before the radiation doctor appointment so I could determine whether I needed to see the radiation doctor for radiation treatments yet the chemo doctor was rightly annoyed that I declined all his recommended chemo dates.      I still have yet to find out how much the radiation doctor charged for her first visit and for the reading appointment of the sept pet test. 


I titled this skipping chemo treatments.    I had several relatives and others disagree withskippiing , and even the nurses/doctors disagreed  yet I was so disliking the IV needles I needed a break from the whole thing.   I think that maybe a month of rest here and there helped the body and made the tumor go away.

How many here also have disagreed with their cancer doctors  and partly done it their own way?  How many doctors dismissed them or referred them to another cancer doctor due to being uphappy their patient was asking too many questions and not just accepting orders from them?  Just curious. 

How many here have skipped chemo dates here and there and found it caused no issues with their overall treatments?  How did they deal with medical people and family who opposed what they chose to do? 


Right now I am tumor free per the xrays had.   Hopefully I will start gaining a little weight and stop staying at 97 pounds.    I was around 110 pounds at one time.   I kind of like weighing less.   My goal is to get up to 105 and keep it there.



-Amy (Zamy)





po18guy's picture
Posts: 1222
Joined: Nov 2011

...life flows through needles. Hate them or not. Have you spoken with the medical staff regarding resources which may help you get through this? That could include counseling, meditation, prayer, short-term anti-anxiety drugs - any number of things. They know you far better than we do. I say just ask them. 

Posts: 709
Joined: Jan 2017

Hating needles is more psychological than physical. Did you not have a port? Whatever you are doing seems to be working very well and that is hard to argue with. Sounds like you are responding to treatments as well as could be hoped for. Very happy at your results. Hang in there!

lindary's picture
Posts: 711
Joined: Mar 2015

I've always hated needles so given the option of a port I jumped for it. I was actually hesitant about having it taken out when I was told I was in remission. 

You are right that it is your choice about getting chemo or not. I willl say that my cancer (follicular lymphoma). It caused fluid to build up around the lung on the right side. They drained it but it filled up within a few days so they ended up putting a catheter in so we could drain at home daily. Between chemo and the catheter the fluid build up stopped by the 3rd chemo. The cath was taken out after the 4th chemo. Do you know if your cancer is causing the fluid build up?

Posts: 709
Joined: Jan 2017

I have seen no fluid in my lungs. However I was made aware of the possibility and advised to call my treatment team immediately if I developed a nagging cough. I have FNHL too. We all seem to respond a bit differently. FNHL is not one disease - it appears in several different forms. You are going through a tough time. Just hang in there and things will get better. Best of luck. 

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