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Considering stopping chemo while things look good

Steve444
Posts: 105
Joined: Sep 2014

I was diagnosed with stage iv rectal cancer (spread to lymph nodes and liver) in February of this year and have about run my course for the initial heavy chemo regimen.  My last PET scan showed that my tumors are no longer visible, so they say I'm in remission.  I'm not sure if that's out of the norm, but happy that my 9cm tumors are no longer visible and that most of the smaller innumerable tumors in my liver are gone.  My oncologist referred me to a surgeon who said he wouldn't recommend surgery since there are remnents and my liver is too damaged to cut half of it out and expect any different outcome (both sides were 90% filled with tumors).

My oncologst reviewed the case with peers and everyone was excited at the progress but agreed with the surgeon.  So they want to keep me on chemo and avastin for the long term.  I'm really tired of treatment side effects (numb fingers and feet, nausea/vomiting, fever around treatment, inability to drink cold water, painful acne, fatigue, etc...).  The doc says that if I stop chemo, the tumors will grow back.  My thinking is that if I stop chemo until they come back (if they do) then I can just get back on chemo or whatever treatment is available then.  The hope is I'll feel good for a while instead of feeling good for two days out of every two weeks. I'd continue my daily meditations, cut out sugar, stay active, supplements, etc... that I've been doing alongside chemo.

Does anyone have experience with cutting out chemo while in remission without surgery?  I'm only in my lower 40's, so my body is pretty healthy otherwise (thanks to cancer for killing my appetite and eating away all my muscle and excess fat - 60 lbs lost in two months).

ron50's picture
ron50
Posts: 1721
Joined: Nov 2001

  That is a pretty tough call to make mate. I can understand you wanting a break but from what I have seen chemo never seems quite as effective the second time around. I cannot make any comments from experience . I was stage 3 c into six lymph nodes. It was a very aggressive cancer and both surgeon and oncologist expected it to come back. I had the initial surgery and 48 sessions of chemo over 48 weeks. It never did come back and I have been clear for nearly sixteen years . We have some folks here who have been on maintainance chemo for many years . Perhaps you should PM Philleg and ask him about the treatment he has been on . I think he is out to seven years plus now and doing ok.   All the best mate I hope you can gather enough info to make an informed decision .. Ron.

lilacbrroller's picture
lilacbrroller
Posts: 412
Joined: Jun 2012

Hi.  I'm also a stage IV, just beyond the two year mark. Isn't there something your dr could give you that is considered a maintenance  drug? I took xeloda for awhile,and one long termer at my clinic was given just avastin for five years until her cancer started growing again.  While chemo sucks there are some more pleasant varieties without all the nasty side effects.

you are in a good position for surgery or other non systemic chemo  interventions due to your low tumor burden right now.  If I were you I'd let my liver rest a bit, go on some kind of chemo lite maintenance therapy, and read all you can here and other boards like colon club to determine what your next treatment options should be. Once your cancer starts to grow again, especially if it becomes aggressive, you will be under time pressure to make your decisions.  Research to find clinics who will take on stage IV patients and who believe they can cure some cases,  or don't think it is a waste of time to prolong our lives by a few years.   I wasted some money at world class clinics - like you I had a great reaction to my first round of chemo, so I thought I could seek surgery. I didn't find the right clinics, unfortunately, but others on these boards were luckier (and I'm sure did amazing research themselves) and did find willing surgeons and doctors who used other interventions to eradicate remaining tumors. many of these folks have passed the five year survival mark. Some are still struggling with recurrences, some are cancer free.  Not all stage IVs can be helped, but I've noticed a huge variation in medical care from reading these boards. Risk aversion of doctors, treatment options proposed, etc. really something.

good luck

Karin

Lovekitties's picture
Lovekitties
Posts: 3327
Joined: Jan 2010

Welcome to the place everyone wishes they didn't need, but glad they found.

I have no direct experience with the question you asked, but will throw my 2 cents in anyway.

First, being NED (no evidence of disease) is the terminology used mostly here rather than remission.  But in either case, it basically means that as of your last scan the cancer may or may not still be hanging around.  If it is, it is too small to detect on the currently available scan processes.

Second, it may be possible to reduce the chemo dosage to help relieve the severity of the side effects or even eliminate one or more of the drugs which are giving you the most trouble.  There are also other meds which can help with some of the side effects.  I don't know if you are in a state which has legalized pot or not, but they say that helps with nausea, helps stimulate appetite and some get pain relief.

Third, it may be easier to delay any potential recurrance by remaining on chemo, than to fight a recurrance once visible.  On the flip side, you may grow resistant to the chemo and have to move on to another drug(s).

Fourth, you could strike a compromize with the docs by going on a modified treatment plan until time for the next scan.  If still NED then, you could revisit the idea of stopping.  At that time, your liver may also have had some time to regenerate and put you in a position for surgery if you do have a recurrence after stopping.

Unfortunately, cancer treatment is a crap shoot no matter what stage you are.  Every person is unique so what appears to cure one, may have no direct benifit for another.  Having doctors who you have confidence in and getting all the information you can are your best weapons.

Not sure if any of this helped, but hope it gave you some food for thought.

Hope you will continue to hang out with us, regardless of which path you take.

Marie who loves kitties

 

Trubrit's picture
Trubrit
Posts: 4828
Joined: Jan 2013

I remember during my chemo, thinking that I would/could never do it again; but of cours, I would, because the desire to live and fight is stronger than the desire to live a side-effects free life. 

I think I agree with Marie (who loves kitties). Maybe a break until the next CT or PET scan, and go from there. The chances are high that they will put you on a lower dose chemo for maintenance, that may have less side effects. Be sure and go over EVERYTHING with your Oncologist. 

And welcome to the forum. There are so many people here (far too many) who are fighting the fight, or caring for someone who is fighting the fight. We are at all stages and of course, our experiences are different for each individual, and that is why, in the end, you will have to do what works best for you. 

Good luck! We're all here, so don't be a stranger. 

Sue - Trubrit

 

Helen321's picture
Helen321
Posts: 1388
Joined: May 2012

Hey Steve, no experience but ny instinct is to say that the doctors know the patterns from experience and if they all agree then you should try to push through.  Letting cancer come back could mean it comes back stronger, that's quite a risk to take. I'm a little surprised they're not offering a resection. My doctor did a rectal resection even after there were no cancer cells left.

Nana b's picture
Nana b
Posts: 3045
Joined: May 2009

It's a difficult decision, one that I am making now.    I also had a liver resection with no visible tumors, surgeon didn't want to do surgery but ONC told him to use pet scan as a guide and do it.

 

Wonder why they won't do half, let it gow back and do the other half. Just thinking...

I've been off chemo since June and will find out my current status Oct 3rd. 

 

Good luck and welcome, sorry you are here. 

NJC
Posts: 72
Joined: Nov 2010

There is nothing wrong with taking a break, whether it be chemo lite or no chemo at all. You more than likely still have systemic micrometastasis but whether that grows in the future or not will be independent of your current chemo regime as cancer can and will grow through chemo. All the while you continue beating up your body, liver, etc. To be quite honest, there really is no wrong or right answer, per se.

We've been at it for 4y and have taken multiple breaks over the years with the longest of 1.5y while opting for surgeries and immune trials during that time. In fact, we're just finishing up a 4m chemo break due to elevation in CEA and continuing on chemo during that 1.5y wouldn't really have made a significant difference in the timing of a recurrence.

As a final thought, studies have shown continuing on chemo past the standard protocool when there is no detectable disease is no more effective than taking a break and continuing when appropriate.

Best.

Steve444
Posts: 105
Joined: Sep 2014

Thanks everyone for welcoming me and providing input.  I have an appointment this next week my my onc and both public and provate replies are helping me build more questions as we ponder next steps.  Based on conversations last week with the doc he already cut out Oxy as he said it had the most side effects.  I did enjoy drinking cold water after my last treatent, didn't have the jaw pain when trying to chew and have pretty decent energy.  He also cut back on dosage of the other two chemo drugs.  He did say there are other treatment options that we'll discuss in the coming weeks. 

 

I didn't have a problem with chemo until recently.  It seems the symptoms are getting worse over time with each treatment (typical I know).  When I first started chemo I was already exhausted all day every day, layed down for most of the days, lost my appetite, felt nauseous, was having painful BMs (or urge to) every hour, was loosing two piounds a day, etc...  After a couple chemo treatments I started feeling a lot better.  So I guess when I look at my life now on chemo and before chemo, I'm still feeling much better now than I was before.  Maybe that should give a clue as to what I should be doing.  Blah blah blah, anyway, thanks again and I'll continue to discuss with the doc.

thxmiker's picture
thxmiker
Posts: 1282
Joined: Oct 2010

You may want to look at good diets to help reduce the affects of cancer, and help build the immune system.   Patrick Quillin's books made a lot of sense to me.

 

A healthy diet has made me stronger and made my wife feel stronger also.  She walks in the mountains 3-5 miles every day with the dogs.  Since we live in the mountains that makes it easier. lol 

 

I am on my third time of chemo.  The first time was 10 IV over 6 months. (Folfox)  The second time was 10 IVs over 5 months. (Folfiri)  This time I have done 12 rounds over 7 months (Folfiri w/Avastin) and I will do another 6  rounds over three months and then evaluate if surgery will be a posibility for me.  Else, they want to continue chemo.  I figure if it has not worked by that time, why be sick for the rest of my liife from chemo?   I rather enjoy what time I have feelng more healthy then the painful side effects from chemo.

 

Best Always,  miike

tanstaafl's picture
tanstaafl
Posts: 1292
Joined: Oct 2010

Some have had success keeping mets inactive or less active with 5FU (derived) maintenance chemo extended by nonstandard adjuvants like cimetidine, celebrex, PSK, and other natural compounds (more below) with a very high quality of life.  Also we would not give up on surgery without shopping harder with more engagement.

My wife is one of them, we managed to reduce her residual tumor burden after a second surgery following a year of oral maintenance chemo with lots of extras.  In our case, my wife took low dose, oral chemo until 24 hours before 2nd surgery and restarted the next day (! perioperative chemo-surgeries are in the literature). Liver surgery would need somewhat wider margins.  We've always used cimetidine and various natural adjuncts instead of Avastin. My wife took extra cimetidine for surgery itself, both for the cancer mets and to replace the usual proton pump inhibitor used to prevent acid reflux aspiration during surgery (cimetidine has been approved longer, being there first). 

Cimetidine helps stop the spread of mets and may help with some of the existing mets. Celebrex in combination xeloda (and other oral 5FU) has had some dramatic successes.  Various natural compounds, like many of those in the Life Extension protocols, can have cancer and QoL benefits with  5FU (oral derivatives) too.  We only buy 1-2 things from LEF, those where LEF has our lowest cost like PSK($$), the rest we buy at wholesale or discount places.

Diligent biomarker tracking has been useful for us too.   Both for monitoring and treating the mets. We use CEA, CA 19-9, LDH, MCV (in the CBC), ESR most often with others less often, 1-2 draws per month.  This is nonstandard but my wife is far more successful than standard patients in similar circumstances.

 

 

 

serenity101's picture
serenity101
Posts: 82
Joined: May 2013

Does anybody know if his situation might be appropriate for what I think was called the ADAPT therapy protocol through Dr. Lin in Seattle that JAnderson talked about? I'm feeling a bit fuzzy-brained today, so I'm not sure if I'm remembering anything right, but it seems like it was supposed to help prevent spread/recurrence after tumor load was decreased as much as possible. Maybe someone could post if I'm way off base, or where he could get better info if it might be in the realm of possibilities.

tanstaafl's picture
tanstaafl
Posts: 1292
Joined: Oct 2010

ADAPT therapy is Celebrex in combination xeloda.  Celecoxib with combination with other chemo and adjuvants may hammer the mets.  Celecoxib addition to her stack has worked over 1.5 yrs for my wife so far. Whether related or not, we had to stay on top of dosage and INR with blood thinning after a  while, she does take a lot of stuff.  Celecoxib takes a consulting doctor for support and scripts with some cautions, monitoring and research, but we don't ask or wait for "permission" or to get some official trial enrollment.

annalexandria's picture
annalexandria
Posts: 2573
Joined: Oct 2011

my situation has not been exactly the same as yours (I'm stage 4, chemo didn't work for me at all, surgery was the only thing that kept me going), but I do have some thoughts about it.

I feel that those of us who are stage 4 have to consider QOL when making our decisions.  At least for me, it's not just about quantity, even at my age (dx'ed at 43).  So I think it's very legit to try and find a more manageable approach to a long-term situation.

The ADAPT protocol that has been mentioned might be something to look into.  The chemo part of it is not as harsh as your present regimen, and the effects are given a boost (apparently) by adding in the arthritis drug Celebrex.  Edward Lin in Seattle is the oncologist who is using this protocol, and I think he is willing to consult with people who are not his patients (our member janderson would be someone to ask about this, as he recently saw Lin).

I also think trying to figure out where surgery might come into play at some point would be helpful.  Have you had a second opinion from someone outside the group you're presently working with?  Preferably at a NIH institution, if you are not already at one.  

Stay strong, and keep us posted on how you're doing!  

Ann Alexandria

sharpy102's picture
sharpy102
Posts: 370
Joined: Apr 2009

SteveCSN: when one gets chemo, it kills most (99%) of cancers if the drug is successful. But there's 1% that survives (alas, not necessarily visible by scans). Those that survived have been suppressed greatly by the chemo, however as soon as you stop chemo, they will be more aggressive, and not to scare you, but: they will come back in two-three months, and aggressively. Meaning, in about 3 months they can spread all over the place where even a good oncologist would tell you that no surgery, or chemo can do anything at this stage. So, my personal recommendation, no matter how sick you are feeling of the chemo, do not stop it!!!! Please, think about this!

LindaK.
Posts: 490
Joined: Apr 2013

I agree with sharpy102.  My husband had a large tumor removed from his colon in December, 2012.  He did 12 rounds of Folfox (oxy removed after 5 rounds due to severe side effects).  Declared NED in August, 2013 and by November, 2013 another large tumor was in his small intestines.  2 months of mis diagnosis and extremely bad health care providers, another large tumor was removed,  declared stage IV in January, 2014.  By the time the lazy onc. got around to starting another treatment plan, two lymph nodes were involved and he was considered treatable but not curable.  Next day we switched to a much larger and hopeful cancer center and have not looked back.  He has had a series of setbacks, c-diff twice, colitis, parotid gland infections, bile duct stent, etc.  Now hoepfully getting back to chemo or at least Vectibix to reduce size of lymph node tumors.  He was just released from another 10 day hospital stay due to extreme pains in abdomen.

I would suggest staying on top of your cancer, don't wait for it to rear its ugly head.  I wish we had done that last year, I have a feeling things would have been much better for my husband.  A co-worker of mine has been on maintenance chemo for around 20 months and is doing fantastic, working every day in a high stress job and feeling good.  He was diagnosed around the same time as my husband.  We switched to the cancer center he started with.  He was stage IV 20 months ago and is doing good.  My husband was stage 2 21 months ago and is not doing well so go figure....

Good luck with your decision.  Looking back, I would say a few side effects are easier to deal with than another bout with tumors and starting the fight over.

Linda

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