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Chemo breaks

abita's picture
abita
Posts: 1070
Joined: Dec 2017

For those of you on lifetime chemo, is there flexibility as to when you get breaks from chemo. I am really hoping that I could get a month of chemo free time before my next vacation so I have some energy. Just curious how the whole lifetime chemo thing works since my oncologists never want to discuss past next step.

NewHere's picture
NewHere
Posts: 1340
Joined: Feb 2015

I have not taken a full chemo break, but I went from every two weeks to every three weeks based on somethings posted here and after discussion with my doctor - basically there is not enough to say one way or the other as to whether every two weeks was much more effective than three weeks and it gave me more good days.  I have some trips planned, so going to two weeks so as to not have chemo too close to a trip.

In terms of a chemo break of a month before vacation, you also need to consider the vacation time and how much time between sessions.  I am on FOLFORI and Avistan and when it looked like I was heading to a four week gap, it seemed to be too much (implied by nurse).  There is also things out there that too much time off can "help" the cancer to mutate.  I am not sure about this though and really would love to see more studies.  

As to your other post, the tired feeling has become more cumulative for me.  Apparently it builds up.  But I am sort of at a plateau now where it does not seem to have gotten worse recently (I just got unplugged from my 22 treetment since I had to go back on chemo. Will be on it for life also.)

abita's picture
abita
Posts: 1070
Joined: Dec 2017

I was thinking like when they shrink so small that they are down to foci cells. Are you saying you don't take breaks when they get so small?

NewHere's picture
NewHere
Posts: 1340
Joined: Feb 2015

If they went that small, I probably would consider that for sure.  Right now I have cancer in my lymph nodes (looks to be stable), spine (looks stable) and dozens (> 60) of tumors in my lungs - looks like many finally stopped growing, others show sign of being knocked off but a couple of ones now filled in and doubled in size in three months.  But if I ever had a scan where stuff was so small to that level, I would probably take a bit of a break.

abita's picture
abita
Posts: 1070
Joined: Dec 2017

More than 60 mets in lungs!?! I am so sorry. My last scan showed 3, in lungs, 1 of the liver ones was no longer seen on ct, and the other had shrunk. My last pet showed hotspot on lymph node, so possible spread I guess, but all were smaller than the ct I got 6 weeks before I started this chemo.

NewHere's picture
NewHere
Posts: 1340
Joined: Feb 2015

I am actually doing pretty well all things considered.  There is one about 5 cm, most are .5 - 2 cm.  But I am exercising a lot which the doctors feel has probably kept me off of oxygen sitting on the couch.  I try to work out before getting hooked up in the afternoon and do something right after disconnect.  I used to walk the first full day when I was on the pump, but a bit tougher.  And some cycles I need to give an extra day of rest after disconnect.  I got disconnected yesterday and was going to run today.  But was feeling a tad off.  Will go tomorrow though.   

That is great news about the one on the liver no longer showing up on the CT and that things are smaller.  Knowing it is working definately makes going through this easier.  I was real close on the last report, except for the two problem spots.  If the next one is all stable or shrinking, I will be dancing. :)  

Butt's picture
Butt
Posts: 355
Joined: May 2018

I also have dozens of mets in my lungs. I missed 1 treatment in July, was without chemo for a month and did the same in October. Before that I did the same in May.

abita's picture
abita
Posts: 1070
Joined: Dec 2017

I feel like breaks are worth it as long as doesn't adversely affect too much

PamRav's picture
PamRav
Posts: 323
Joined: Jan 2017

I’m not sure you’d call it a holiday, but I went off maintenance in June due to sll the miserable side effects that were quality of life issues.  We started with one month off, when my hand and foot was still not resolved we went with another month off.  In the interim I had a PET in which nothing lit up.  I decided at that point to just stay off till i had a  reoccurence.  Last weeks scan showed a growth of the lung nodule as well as a hot lymph node.  Ill be starting radiation therapy in a few weeks in order to keep it at bay and keep me off chemo as long as possible.  I was told next time i go on chemo. No holidays.

im in the same boat as all of you.  Had mets to liver, requiring chemo and surgery   Then it migrated to the lung last year   Luckily its only the one lesion, but also i had 2 lymph nodes lite up previously 

This is my first go round eith radiation  hope it does the trick  

p

 

abita's picture
abita
Posts: 1070
Joined: Dec 2017

Were you glad to have the time off from chemo. My thoughts really are stop 3 or 4 weeks before my vacation then right back on. I would love to be able to get my teeth cleaned and one small surface cavity filled

NewHere's picture
NewHere
Posts: 1340
Joined: Feb 2015

I have my teeth cleaned when on chemo and had a root canal the firs time (the chemo caused an abcess).  I get an antibiotic to take an hour before the appointment as a prophylactic. 

As an aside, more as a general thought that I go by,  to the extent that there are times where we can enjoy our life a bit more with jiggling some treatments, it is worth it to me.  For instance, my 3 week intervals vs 2 week intervals.  If the difference means I will be here for one year 6 months and having 14 days out of 21 being pretty darned good or one year and 8 months, basically starting to feel okayish right before heading /going to the next treatment, I will take the one year 6 months.  Not willng to totally throw the baby out with the bathwater and take extreme risks - meaning that if 3 weeks WILL take me out in one year six months while 2 weeks will keep on working without question, then I may have a different take.

PamRav's picture
PamRav
Posts: 323
Joined: Jan 2017

i totally enjoyed my time away from chemo.  I, too had dental work donw. Root canal, cavities filled, crown replaced, teeth clean. Dont think anyone was ever so happy to go to the dentist than me! Lol

I took one very short trip, mostly just enjoyed feeling well snd growing my hair.  

SoCal42
Posts: 78
Joined: Jul 2017

I had a scheduled chemo break of about two weeks when one of my kids was graduating from high school, which my doctor thought was totally reasonable. I also had about a one-month break when I had SBRT for lung mets. Recently, my doctor suggested a two week break to help recover from all the cetuximab side effects that were making me miserable. At first I didn't want to do that, because I'm almost done with my whole planned course of treatment, but then I realized the side effects were really causing too much pain. I don't actually know if I'm on "lifetime chemo" or not, the current plan is to stop treatment in three more weeks and then see what happens.

abita's picture
abita
Posts: 1070
Joined: Dec 2017

Do you have any mets that can be seen on scan? I am realizing from the answers here that it seems they continue the chemo even if too small for scans because without surgery they grow back. I have told myself lifetime chemo so I can deal with it and am not devastated by bad news since that seems to be the thought, However, I do pray that I get a miracle. As for the chemo break, I am hoping to get an extra week of no chemo before my trip, so I don't think that is huge. I would be ecstatic if mine shrunk enough and the doctor suggested every 3 weeks instead of 2. I am overly optimistic, but I have had the rug pulled out from under me so many times, I am trying to be pragmatic as to what would make me happy. 

SoCal42
Posts: 78
Joined: Jul 2017

On my last scan back in August, the lung mets had shrunk about 50% since April, and that was after both SBRT and chemo. The radiation onc also said the view was very hazy at that point (from the SBRT), so the 50% was very approximate. I will have a new scan soon to find out what's going on with the mets now. My oncologist's plan to stop treatment for now was based on those preliminary results. I'm assuming she'd change course if we found out that things were getting bigger instead of smaller.

abita's picture
abita
Posts: 1070
Joined: Dec 2017

I just realized that my oncologist is probably so focused on keeping me on treatment because he thought I was going to quit over my hair, that maybe is why he doesn't give me a timeline for when I might not have to have chemo anymore. :) As devastated as I am about my hair, my will to live is very very strong, so he doesn't need to worry.

My prior scan was 6 weeks before I started the new drugs, so we don't really know how much they shrunk because we don't know how much they grew in those 6 weeks. The only thing we know is all were smaller than on that prior scan. The scan today will really show how well it is working. Honestly, as much as I hate being at less than 100 percent, I don't mind doing more rounds if it strengthens the possiblity of killing all the cancer cells. But it sure would be nice to be chemo free!

myAZmountain
Posts: 420
Joined: Apr 2018

My chemo treatment was interrupted twice by infected ports,  went like this :3 infusions, 3 weeks off, 3 infusions 8 weeks off, then 3 more infusions. Over about 7 months. Nothing grew, and I truly felt like my body was able to bounce back with the breaks and my immune system was able to recover and fight back.  My scans showed steady shrinkage of the 2 PET scan postivie lung tumors and no new growth at all--when worried about how taking a break may affect me I decided that if the cancer was so aggressive that a few weeks off were the difference than so be it. How was your reunion? Hope you had a good time!

abita's picture
abita
Posts: 1070
Joined: Dec 2017

That is fantastic to hear! I defintely think if they all get to the point of foci cells, I will ask about doing every 3 weeks, or a break, or something. I am pretty sure my oncologist will bring it up when the time comes, but I can't help thinking of the scenarios. He cares very much about my quality of life too.

The reunion was so amazing. I am from a small town, so it is kind of like no time passed, plus facebook :) no one cared how I looked, everyone was so happy to see me. I was so happy to see them. 

 

Real Tar Heel
Posts: 254
Joined: Nov 2019

Sounds pretty good to me. I'd like to take a few breaks

SoCal42
Posts: 78
Joined: Jul 2017

So to update, I'm now on a 1-month break from chemo. The Erbitux suddenly started to cause the rash to spread to my arms, legs and abdomen, which my doctor thought was just too much. Because I had a Thanksgiving trip planned, we decided to do a break for a whole month, so I could be in better condition for my trip. Then I will complete the current chemo plan right after that, with a reduced dose of the Erbitux. I only have one more cycle of chemo planned for now, depending on the next scan.

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