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Chemo for Life - Just found out

IcyMoonstone
Posts: 41
Joined: Feb 2017

At my treatment Friday everything was going according to plan.  I was told I oculd get the "bee sting" anemia shot, so that would help with the fatigue.  They are looking at giving me some "vacations" between treatments.  Maybe one week off or switching to every three weeks instead of every other week.  I asked how long "Vacations" could be for me with what I have.  And it ends up the longest "vacation" they would let me have is 2 months.  I asked, so I will be on this for the rest of my life.  With a sad look my Dr. said yes.  Any time I have off, the mets can grow.  I knew this was a possibility. I think over the last 8 month I had been wanting to ignore this reality.  The rest of my life will be on chemo.  That is a hard reality to swallow.  That is a hard reality to come to grips with.  What is worse, is that we know each treatment gets tough.  Each treatment takes a little bit more from us.  After 15 treatments, I am a pro at this.  And knowing that is what my future holds is so incredibly difficult.  Before I was hoping for a miraculous healing.  Before I was hoping to get to ring the "Chemo NED bell" at my center.  But now I know the odds of that are VERY low.

I still hope for a miracle.  I still hope for something unexpectedly good to happen.  But for right now I have to come to grips with what my life will contain.  And as a single mom it is even tougher.  I have no one at home to lean on.  I have wonderful friends, but it isn't quite the same. 

I apologize for being a downer.  Usually I am the one to crack jokes and make everyone laugh.  I am usually the one to find joy in every situation.  Just right now, that is tough.  Plus I am still coming out of feeling icky from treatment 15. 

Thank you for giving me a place to vent and with people who understand.  I have no one else in my life that has battled cancer, so I am doing this solo in that sense too.  So thank you for giving me somewhere to say what is on my heart!  I know I will fight through this, that is what I and we do.  But right now it is tough. 

Sending much love

Trubrit's picture
Trubrit
Posts: 4756
Joined: Jan 2013

Let me assure you that we are here to listen, so PLEASE do not apologise for being a 'Downer'. Every single one of us have posted their fears, worries, anger, disappointment etc. here on the forum. This is why we have a forum. 

I think, once the shock of this news has sunk in, you will find that you bounce up again (how far up, I can't say). I'm just thinking about all of the folks I have known who have been and are on the chemo for life.  One of my friends now has just started Lonsurf. He is having very few side effects and is travelling and flying and doing so many things.  Of course, I am quite sure he has his downer times also, it just cannot be good to look at life filled with Chemo. I just want to give you a glimpse of hope, that the side effects might not be very, very bad. 

And yes, go for the miracle. Why not! That is what I live on. That I'm going to be one of the lucky ones. Someone has to be. I do think we have to work at it though. Not just sit back and expect to be a miracle. I'm trying....its not easy to give up a lifetime of eating what I want when I want. 

I wish you luck and miracles. 

We're here for you all of the way. 

TRU

Joan M's picture
Joan M
Posts: 363
Joined: Oct 2016

I am on "maintainence chemo" for the rest of my life too.  I get Avastin infusions every 3 weeks, and take Xeloda for 14 days and then 7 days off xeloda.  I was very worried about side effects, but hasn't been as bad as I thought it would be.  I was very surprised to see that my tumors continued to shrink while I was on the xeloda.  I had no idea that taking the tablets orally could be so powerful - they look like my vitamin D supplements.  It is supposed to be the same medicine as in the 5FU, or at least similar to it. 

I asked my doctor if the side effects get worse the longer you are on it, but he said usually people get them right away if they get them at all.  He said it has to do with how the enzymes in your body react to the medicine.       

What type of chemo are you on?   

IcyMoonstone
Posts: 41
Joined: Feb 2017

I am on FOLFIRI but without the Irititecan.  So I am just doing the Leukavorin, Avastin and 5-FU.  Three day routine, off 11 and then back on. Fatigue is the worst thing I have to manage.  I have gotten the heart burn down so that I can eat almost anything.  Now it is just fatigue, bone wearying fatigue.  I had my last treatment on Friday through Sunday.  So by mid-day tomorrow I should start feeling back to normal.  I just have to fight through today. 

It was just a hit to the system to hear the "forever maintenance" statement.  There was a huge part of me holding onto getting to go off treatment and live like cancer was part of the past.  I really set myself up for failure on that one.  But now I need to learn to accept the new normal right?   That is what we all do.  We learn to live with what has been given to us, and we make the best of it that we can.  I just hate this situation.  I keep hoping to wake up from the nightmare.  But at 8 months of treatment, I know this is reality. 

Joan M's picture
Joan M
Posts: 363
Joined: Oct 2016

You have alot to live for and kids who love and need you.  It does stink being on chemo, but much better than dying from cancer.  I keep hoping for a miracle too, like you said.  I believe that my miracle for now is the chemo.  It has kept me alive so I can see each day with my family.  Being tired takes some of the joy out of your life, but just be good to yourself and get the rest you need to fight this battle! 

You should ask your doctors about going on the xeloda and Avastin.  When I saw Dr Axel Grothey at Mayo Clinic in Rochester, he said that most people will do better and survive longer if they have 8 treatments of the traditional IV chemo, and then go on the Xeloda tablets and Avastin maintainence. Grothey is one of the best doctors in the world for treatment of colon cancer.  You can look up his studies and clinical trials.  He said there are fewer long lasting side effects and that the overall survival rates are better. Also that after 10 to 12 treatments many get sick from the chemo or have permanent neuropathy. He talked about all the new treatments they are developing.  He gave me hope that I could survive this and  said that he thought I had many more years of life ahead of me. 

I am wondering why they have had you on all the IV meds for so long.  Maybe you should seek a 2nd opinion about your long term treatment.

I agree - waking up from the nightmare would be so nice... It is so hard to understand why some get hit with these life threatening diseases, and  other just sail through life with no problems.  As we have all learned the hard way - life isn't fair.  If it was good people would never get sick, and only the bad people would die young.  We would all live to be 100 and die peacefully in our slepp without ever getting senile.   

For me, it seems that I was under extreme stress for several years prior to my diagnosis.  My doctor said he thought I had developed the cancer about 3 years prior to the diagnosis.  That period of my life was the most difficult time in my life.  Many on this forum have said they were under a great deal of stress prior to their diagnosis too.   

What has given me hope is seeing so many on this forum who have survived for many years - some have survived for 20 years!      

Keep praying, and never give up.  I wish you the best of luck!   

Joan

Joan

IcyMoonstone
Posts: 41
Joined: Feb 2017

I think I will ask my dr. more questions about different treatments.  I know this is one they have seen the best luck on and that people could stay on the longest.  The 5-FU is for 3 days and I think that is pretty standard for it.  The other two are just at the treatment center.  I get to carry that hideous fanny pack around with the 5-FU (can they make it in a pretty bag please? :))

 

I am just having a hard time getting life to settle down.  I need it to calm down.  I miss riding horses so much, but I just don't have the energy.  I need to zap some energy from my kid.  She has plenty right?  I could use it. 

I want to say thank you so much for this.  I have been longing to have others to share with.  It is helping my mental state so very much.  So much more than I can express. 

I was under extreme stress until I got diagnosed too.  I was trying to climb the work ladder and be a single parent with all that entails.  I was very stressed.  I don't let much affect me like I used to.  Cancer definitely changes the priorities doesn't it?  It points out what is important. 

Seeing others on here with success has showed me there are chances.  It gives me a little bit of my hope back.  I need it.  I know attitude is key to kicking this and that's why I was getting so scared about losing my hope and upbeat attitude. 

I want to see my kid graduate high school.  The thought of not being there for that breaks me apart.  I just need to make it 8 more years... and then I will set another goal. 

Thank you!

 

beaumontdave's picture
beaumontdave
Posts: 960
Joined: Aug 2013

We prepare for the worst, and hope for the best, and deal with ping-ponging between the two poles. It sucks to deal with, but it really comes down to perspective. Yours took a big hit when the doctor said "forever", mine would too. For the third time I've seen/read a story recently, on the success they've had with targeted immunotherapy on glioma patients [thats the brain tumor that took my wife], they're getting closer to being able to make the body destroy the cancer. They now can cure 90% of Hep C cases, which 8 years ago was a "forever" thing. Don't give your hope and faith up to a word that may not mean a thing. All you need to do is hang on.............................................Dave

IcyMoonstone
Posts: 41
Joined: Feb 2017

That hit hard!  Thank you!  I needed that.  When I hear such things from those not going through it, it is differerent when we hear it from fellow patients.  It isn't the platitudes we hear from people hoping to say the right thing when they don't know what to say.  It is from people knowing what is going on, what it feels like, where the worries lay. 

I needed stats like that.  I do a lot of math and math speaks to me. 

Oh my gosh thank you so much!  You have made my life a little easier for the day.  I wonder frequently if I am a fool for hoping.  But whatelse do we have?  When we are in this slot, most choices are taken from us.  The choices we have left are to hope or not hope.  The choice of what attitidue we are going to stick with.  It is so easy to get trapped into the dark attitude without something there to lift you.  And what you said today did that. 

The ping-pong is real.  I give kudoos to my friends who put up with it from me.  They know that come Thursday, I will be far enough from my treatment, that I will return to the normal bubbly self.  Hope will return.  It is the darkness of the Monday-Wednesday after treatment that kick me every time.  Today has been a little more tough because of the "forever" news. 

So thank you for the help!  Thank you very much!

 

Travis8
Posts: 23
Joined: Jan 2017

I wish you all the luck in the world Icy. You have encouraged me before and I hope me or someone else in this forum can encourage you as well. We are all here for you anytime you need to vent. We understand. 

Bellen
Posts: 281
Joined: Aug 2016

Hi Icymoonstone - I just had my 13th folfiri treatment.  You posted that you were having folfiri without the irinotecan. Do you know - was there a reason they took the irinotecan out of the cocktail?  I have avastin, then leucovorin and irinotecan, then 5Fu push and then 2 days of 5Fu bottle. It really is a lot and then back at it really 12 days later after take off 5Fu bottle. Had CT scan ater 6 treatments - said tumours were "markedly reduced" (have CRC with multiple liver mets).  Last CT scan, after 12 treatments, small tumours had some reduction, but I was disappointed that the larger ones had little response.  My Onco said it was a good report because it reported "nothing new" showed. After 14th chemo having one treatment break, and then have asked for an extra wk (have every 3 wks, instead of 2 wks) a few times when the weather gets nicer.  Onco says it will not make a difference in the tumours with this break, and thinks I need it - having nose bleeds, sore mouth, nausea frequently, chronic constipation issues, can't seem to get my system straightened out.  Also get 5 days of neupogen shots after chemo bottle off, so have bone and spinal pain that requires meds (taking tylenol, but may try claritin as I have heard it works well).  So, don't get a lot of "good" days - about 4, and then back at it.  Had blood transfusion last wk, as I have had some days of being out of breath.  Looking forward to a break, and as you said Icymoonstone, being on chemo for life are hard words to hear, but I am in the same boat as you.  I believe this will be my situation, with hopefully a few breaks here and there.  Wishing everyone the best. 

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

I'm so sorry you're having to deal with this. And don't apologise for feeling down about it and posting on here. I think I might be the worst for posting my feelings on here. But even people I know who have dealt with cancer haven't had this cancer and nobody can relate. Plus they've all beat it, beaten it? Whatever. I was so hoping that I had, too. But I was told that I'll have to live with it. I don't know if my future will be something like yours or if I'll gewt something to stop the mets for a bit and then do it again once they start growing again. I don't want to think about that at this point.

I will never get to say NED, either, and that was a huge blow to me. I hate the idea of the CT scans and doctor visits and treatments that I'm looking at for the rest of my life. It makes me angry and feels so disheartening. But the alternative is unthinkable. And Im grateful that we have options these days. Not so many years ago I'd already have been gone. But at the same time I get very down about it.

I hope that there will come a time when you get a happy surprise and they tell you that they can hold off for a while and you get a good, long break because things have improved. I hope that they come up with something that's an alternative that really helps and soon. I pray for a day when we wake up and can spend a day not thinking about our cancer even once.

Best of health to you. Sending you hugs.

Jan

PhillieG's picture
PhillieG
Posts: 4884
Joined: May 2005

I know we view things differently but I try to not use the words "never" and "always" because they don't realistically apply. Well, I'm pretty sure I can safely say "I'll never become President of the US".

There are new treatments in the works. Maybe you or I can benefit from them. While at first my goal was to become NED, it's changed over the years. The likelihood of me becoming NED is slim but one never knows. I honesty don't think about it much. I'm more concerned with not becoming DEAD :-) 

I do realize that how we approach our disease is different. I'm been fortunate to have avoided an osteomy but on the flip side, I've been in continuous treatment for over 13 years. I'm tired but I manage to live what's become a normal life. 

Yes! NED would be great for you! I hope it happens. 

PS: I'm sending you a PM shortly. 

-p

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

Well, I do hope you're right Phil! I'd love to be able to say I'm NED. My onc says I'll live with my cancer for however long I live. She's said about 10 years and my surgeon had said thirteen years last year so it sounds like they're both at around the same mark for longevity. And you're absolutely right. Something could come up suddenly and we'll all be NED, wouldn't that be a blessing? I've told my onc that I'd be interested in doing trials if anything comes up.

I don't think I'll ever be a model or run a marathon or be rich, Phil, and I'll stick with that. I got your PM and have responded, thank you!

Jan 

DeniseLM
Posts: 3
Joined: Mar 2017

So sorry you are going through this. My husband is in the same boat and the news really stung, and honesty still does.  I am not an optimistic person by nature (I prefer to self-describe as realistic as opposed to pessimistic) but I have decided to keep thinking that there is some new treatment is coming at some point.  The awful chemo regiment is what has to happen right now to get to that point.  Just know that you are not alone and "keep swimming!"

traci43's picture
traci43
Posts: 775
Joined: Jul 2007

So sorry that you had to hear that.  I must say that 8 years ago when I had my first recurrance my onc said basically the same thing, and gave me 18-24 months, based on the stats at the time.  Well, as you can see, I'm still here. I decided to get a second opinion and got another oncologist that treated my cancer more as a chronic disease.  I would suggest a second opinion, perhaps at a big cancer center.  That's what I did and it was encouraging.  There are different drugs and drug combinations out there, see what works for you.  At the very least try Xeloda.  Most of us that have had 5-FU and Xeloda, the pill form of 5-FU, have far fewer side effects on the Xeloda which at least gives you a better quality of life.

I'm sorry that you are here and in this situation.  Were always here to listen.  Take care, Traci

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

What a wonderful thing to share Traci! Good for you!!!

Jan

Trubrit's picture
Trubrit
Posts: 4756
Joined: Jan 2013

we're looking forward to hearing from IcyMoonston, who had her brain surgery scheduled last week. 

 

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