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Starting Folfiri January 19th after 5 month chemo break

Joan M's picture
Joan M
Posts: 411
Joined: Oct 2016

I've been off chemo since August 2017 due to an inflamed gallbladder and subsequent failed attempt to remove it.  I had a biliary tube through my abdominal wall until the day before Thanksgiving, and was recovering from surgery through the first week of December.  After that I started feeling better and flew to MD Anderson in Houston on Christmas day seeking a second opinion regarding treatment for my stage 4 colon cancer.  

I am on a waitlist for trials, and possible immunotherapy trial, don't know much about it. If anyone has been put on a waitlist, I'm sure they don't tell you anything until the trial is ready and you're approved to actually start it.  Sometimes I think it may be best to wait until after the trials and get the medicine that is proven to be better than the current standard of care.  Seems that the currnent regimine of Folfox or Folfiri have been around for along time without many changes.  

My CT scan at MD Anderson the end of December showed at least 3 tumors in my lungs had gone from  4-6mm to 1.1cm.  My colon was clear and liver was stable with tumors still shrinking after Y90 in April 2017.  It's been a few weeks since that scan and I'm just getting back on chemo tomorrow.  Both doctors told me that my cancer has been growing very slowly, but the tumors have probably grown more since then.   

The doctor there recommended the same treatment as my oncologist at home:  that I go on Folfox or Folfiri.  I was on Folfox in 2016 after my diagnosis, so I opted for the Folfiri to avoid the neuropathy and other effects of Folfox.   Since Oxaliplatin causes so many problems, I likely  would have been switched to the Folfiri within a few months anyway.

It's hard to go back on the chemo after such a long break.  I know I need it to get rid of these tumors.  But I've been feeling so well and am enjoying life.  My hair has grown alot in the last few months and my nails aren't breaking all the time.  

My dermatologist said to take Biotin to help make my hair and nails grow in stronger, and hopefully help with my skin too.  None of my doctors think the cold caps work to avoid hair loss. 

I've read reports from people on this board that haven't lost hair or been too sick on the chemo. 

I would love to hear from anyone who has been able to tolerate the chemo long term.  You can message me and/or respond on the board. 

I look forward to beating the cancer, and want to stay as healthy as possible in the meantime.  Hoping to avoid oxaliplatin so I don't get the long term neuropathy, or hearing loss caused by the platinum based chemo.  

Trying to stay positive.  It's hard sometimes not to feel sad or scared though.  I don't talk about it to my family since they're all so happy I'm doing well now, I don't want to worry them. 

Praying for no adverse side effects, and good results!  

 

Joan 

RichieTheK
Posts: 13
Joined: Aug 2017

I've been on FOLFIRI since my diagnosis in May 2016. I have a genetic mutation that allows me to tolerate a higher dose of irinotecan than normal, and I have been getting that higher dose. I have been fortunate in not having severe side-effects. I do not get the severe diarrhea that many people get from irinotecan. I have lost hair and experience some fatigue. 

 

FOLFIRI alone worked well for 14 months before my cancer started adapting to it. My doctor then added bevacizumab (Avastin) to it and that's where I am now.

 

Everyone's response to chemotherapy is different. I hope that you are fortunate enough to not experience any severe side-effects. 

 

Rich

Joan M's picture
Joan M
Posts: 411
Joined: Oct 2016

Thanks for the response, Rich!  Do you know what genetic mutation allows you to tolerate the increased Irinotecan?  

Wonder if anyone else has similar experience to you? 

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

Hi Joan, it's crappy to have to go back on after a stretch where you feel pretty good. Actually, it's hard to go on it, period. I'll be in the same boat soon. I'm lucky in that I've never lost my hair to any of the chemos I've been on. It's odd how we all react differently, isn't it. I've been on 4 different ones including the folfox, which I found intolerable. And then got a blood clot from it so can't take it again anyway. The worst reactions I've had were fatigue and some caused nausea but not too bad.

I hope they have more options for you. An immunotherapy chemo would be great. That's what work for me but they tested my tumour to make sure it would work, it doesn't work for all colon cancers. I'm always perplexed at the different cancers. We all have colon or rectal cancer yet each person needs a different chemo or combination of chemos. It makes me think they'll never find a 'cure for cancer'. Becuase there are so many variables just in this one and there are many different cancers. A friend of my husbands is being treated for bladder cancer and he's being given a virus to fight it. I think it's tuberculosis, if I'm not mistaken. So they shoot this virus into his bladder and then he has to be very careful about using bleach every time he goes to the bathroom so the live virus isn't sitting there. Amazing. 

Anyway, I'm having a tough day with having to go see my onc this afternoon and I've been off chemo since September and I'll be back on it, she'll decide when today. I've been whining to my husband about how this never goes away and even if a person is NED they still have to be continually tested to see if it's returned. I'm just so sick of it all. But happy to still be here.

Jan

Joan M's picture
Joan M
Posts: 411
Joined: Oct 2016

I'm happy to hear from someone who didn't lose hair on chemo.  Seems like there are more people out there than I was aware of.  Seems like a little thing, but hair is important to many people and not just women.  

Most important of course is does it kill the tumors?  Really hoping for good results!

What immunotherapy were you on and what type of tumor did they say you have?

Good luck to you Jan!  

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

Hi Joan, my understanding is that most people on chemos for colon cancer don't lose their hair, just some do. The chemo I was on and will be again is called Panitumumab or Vectibix for the everyday name. I know a few people who have been on it on this board have had great success with it. It did shrink my tumours somewhat but I wasn't able to finish the regimen. I'm on it for tumours that are mets in my lung. I have no cancer anywhere else as far as they can tell. 

Good luck to you Joan, I hope you keep your hair. I see women at the cancer centre with hats or wigs and I feel so bad for them.

Jan

Joan M's picture
Joan M
Posts: 411
Joined: Oct 2016

I hope things go well for you, and of course for me too.  I'll just stop worrying about my hair and be happy if the tumors shrink.  Mine are (or were) only in my lungs on the last scan.  I'm going to ask my doctor about the meds you're on if it gets to be long term chemo for me.  Hope to get on an immunotherapy clinical trial at MD Anderson, so won't change anything until then.  

BTW didnt start the chemo yesterday.  They weren't able to get everything ordered in time for me to start. So will start this week instead.   

linda7408
Posts: 21
Joined: Mar 2018

Hi Jan. I had rectal cancer that mets to lungs. It's sprinkled between both lungs. My onc said there were no trials available. There is at MDA?

 

kyolcu
Posts: 112
Joined: Jun 2017

Hi Joan,

I sent you an email regarding hair loss and I use Nettle shampoo, it may help you as well. I used folfiri chemi for 18 months with minimum side effects and now on Cetuximub and Irinotecan for four months at MD Andrrson Cencer center.

Travelmom's picture
Travelmom
Posts: 14
Joined: Dec 2017

Hi there. My boat is close to yours... sadly I had too had 6 months of Folfox and after NED for 6-7 months it spread to both ovaries. Had them both removed. Next scan showed mets to abdominal cavity lymph node and small nodules in lungs. So now I'm on Folfieri. Only 2nd treatment but so far so good. Nausea ..just an fyi.. my nails and skin where beautiful during Folfox but my hair thinned terribly. Maybe it will do the opposite with Folfieri..ha ha positive thinking. Anyway please keep us informed..and to the survivors out there. God bless you!! Please continue to post and spread the optimistic outlook!!

Joan M's picture
Joan M
Posts: 411
Joined: Oct 2016

I'm guessing it will be similar to the folfox as for hair loss and nails.  I just need to focus on getting rid of the tumors, everything else is secondary at this point. My hair grew back so I'm lucky I guess.  Just want to beat the cancer and am getting concerned becuase of the long delay in chemo due to my gallbladder problems.  

Yes keeping a positive attitude helps get through the chemo and makes it easier for the family and friends to deal with our illness.  I hate having people worry about me, especially since we have no control over outcome.  It's all dependant on how our bodies react to the chemo or other treatments that the doctors order.  

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

i really have nothing to add other than I hope the chemo goes easily for you and kills off those rotten cancer cells.  

My hair thinned on folfiri but no one seemed to notice but me.  Hair is important to us ladies for sure, but I have to say i had no idea that some of the women in my group support sessions were wearing wigs  they were just that good  So if worst comes to worst that’s always an option  

wishing you peace and healing

pam 

 

 

 

Joan M's picture
Joan M
Posts: 411
Joined: Oct 2016

Some of the wigs are really nice.  The one I wore when I lost my hair before was so hot it was like wearing a winter cap.  But of course, I will probably wear it again if I lose my hair or find another one that is more comfortable to wear.  

At this point, I'm getting more afraid of the cancer, and less afraid of the hair loss.  I'd rather be bald and alive than dead. 

My chemo was delayed a week and I've been feeling really tired this past week, so not enjoying the break anymore.  

 

Newporter1
Posts: 1
Joined: Jan 2018

New to the group.  I was dx with Stage IV colon cancer via a trip through the emergency.  I had a blocked colon so they shipped me off to another hospital that could do the surgery.  My life change that day: March 23. 2016.   My first onc was a matter of fact: you have 2 years to live with chemo and 6 mo if you don't do chemo.  Yikes.  I still had kids at home.  I found another onc closer to me that was a little more optimistic.

So far I have done 41 treatments of folfox with Avastin and 10 doses of Oxaliplatin.  There was thinning of the hair but did not go bald.  Now I am on my 3rd treatment with folfiri and Avastin.  Went bald after the 1st treatment of folfiri.  My hair started to come out so I went to my hair dresser and she shaved the remaining hair.  Looked in the mirror and said hi Dad.  I look a lot like him when I don't have hair. lol. 

 I keep reminding myself that I am better now than when I went into surgery.  I will be making it passed my expected expiration date of 2 years.  It is time to celebrate. 

 

Joan M's picture
Joan M
Posts: 411
Joined: Oct 2016

Thank you for letting me now about the hair loss associated with the different chemos.  My oncologist at home said more of his patients lost hair on folfox and the oncologist in Houston said that more of his patients lost hair on Folfiri.  It sounds like the Folfiri was the worst for you.  I have a wig I got in 2016 when I lost my hair but not sure where I put it since my hair grew back.  I will have to find it right away if hair loss can occur with just one treatment of Folfiri.  It started falling out after a few treatments on folfox, but took a few months to get really bad.   

We were diagnosed around the same time.   I was told I had 6 to 18 months to live.  So am happy to still be here.  I sure hope the long chemo break doesn't do me in.  I know the cancer is growing and was so close to being cancer free before I had gallbladder problems.  

I start on the folfiri this friday - it didnt't work out last week.  So I'll let you know what happens.

Joan 

Trubrit's picture
Trubrit
Posts: 5493
Joined: Jan 2013

You are a fighter with a great attitude, as it shows in your post. You will do well. 

How about introducing yourself on the forum's home page here: https://csn.cancer.org/forum/128

That way we can all offer our welcomes, without running up Joan's post. 

Looking forward to getting to know you. 

Tru

Trubrit's picture
Trubrit
Posts: 5493
Joined: Jan 2013

How did I miss your post? 

Feeling sad and scared. I understand not wanting to share with family, but sometimes I think its a good idea. I see the Cancer battle as a family battle, and you don't need to be sad and scared alone.  I know, you have us here, and we're always ready to hear you out, knowing what you are going through, but the love of a family can't be beat. 

Just my thoughts. 

I wish you every bit of luck on this next chemo trip, and I hope a trial comes up sooner than later. Just one word of advice from my friend; keep bugging them. Don't let your name slip on their list. Her husband never called to find out what was going on, always waiting for them to call. Well, they never did and he has gone. My friend has since been told that they expected them to call. Sad stroy, I'm sorry to share, but keep that ball rolling in the right direction. 

You know we're all here for you. 

Tru

Joan M's picture
Joan M
Posts: 411
Joined: Oct 2016

I will definitely keep in contact with the researchers to see when the trial comes up.  I wish I'd started on the chemo sooner.  I felt realy good for so long and now am extremely tired the last week.  

Losing my hair won't be the worst thing.  Although I am taking the biotin as my dermatologist recommended.  I saw some other vitamin supplements at the store for hair skin and nails that have collagen, keratin and a couple other things.  I may get those to take instead of just the biotin.  

My kids and husand worry about me even though I don't say anything.  I guess talking to them about it may help, and certainly couldnt hurt.  It's not like we aren't all thinking about it.  I know they get used to me doing well and don't think about it.  That's also really good.   I forget about it too sometimes because I have felt really well.

Thanks for the advice.  I will definitely follow up!

Joan  

Tunadog's picture
Tunadog
Posts: 235
Joined: Mar 2017

My Oncologists office has a machine which cools the head to keep your hair from falling out due to Chemotherapy.

A young woman was getting chemo and they put a cooling helmet on her and she didn't lose her hair.

She looked like a cosmonaut. She finished up around a month ago.

Something to look into. It's a newer device and I don't know what it is called.

I wish good luck for everyone!

Joan M's picture
Joan M
Posts: 411
Joined: Oct 2016

I've asked them to get the machine in here but they still dont have it.  I wish I could find something similar that I could bring in.  

Thanks for reminding me about this - I gave up on trying to get the cold cap therapy but need to look into it again! 

Travelmom's picture
Travelmom
Posts: 14
Joined: Dec 2017

It's travelmom again..from top of post. Hi. Anyway....about those Dr's giving you projections for time left??? Really? I have been to literally 6 oncologist and no one has ever said I only have a certain amount of time left. I'm sad that they have said that to some of you. I don't think anyone should have a number looking over them. I plan on beating the hell out of this thing and will be writing again to you all 10 years from now! OK??? Keep your chin..or in my case chins up and shoot for the long haul. I know I am! XOXO

Joan M's picture
Joan M
Posts: 411
Joined: Oct 2016

The doctor who said I had 6 to 18 months left the clinic about a month later.  That statistic was likely based on old survival rates, or for those who don't follow treatment.  

Ive always kept a good attitude that I will beat this cancer too.  Sometimes, it's a bit harder to be positive. 

I've been on a break because of need for gall bladder surgeries, and now the colon tumor grew back so need colon tumor removed.  That surgery is scheduled for April 20th at Mayo clinic in Rochester.  there is also a liver tumor they may remove at the same time.  I have to follow up and see if they will be doing that. I sure hope they do.  Then I have to wait for everything to heal to get back on chemo. Its scary considering how the cancer is growing back without it. But the gallbladder could have ruptured and killed me sooner than the cancer.  now that is taken care of and I have to wait for the colon surgery so it's a series of hard choices, hoping for a good outcome. 

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