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Proton therapy side effects?

jedsnearlythere's picture
jedsnearlythere
Posts: 9
Joined: Aug 2013

Hi all,

Err...I need educating with a big thick cancer book around the head. I'm new to this cancer business and I could really do with some info.

 

Here's the deal...I have advanced esthesioneuroblastoma with three mets to spine and hip. Anyhoo it's HEWUGE and they want to take it out and then do proton radiation with chemo afterwards for seven weeks - 5 times a week.

I am a single mum of three (gorgeous) kids and I don't live near my hospital (MD Anderson) so I have to rent an apartment for the duration and I need to figure out how to care for my little bears....

Can anyone tell me what to expect from the combination..I know everyone's different but like are you COMPLETELY USELESS for weeks and in agony? Or is it like you're just a pyjama clad shuffling zombie for a few days at the end ? How functional am I likely to be? How debilitating is it? and how much pain will I be in ...?

I've heard that proton therapy is less rough on the side effects, has anyone been through it? I homeschool my kids so it would really help to know roughly when I'll start needing to engage some help etc if at all....see? clueless

I've had two cycles of cisplatin/etoposide and it hit me like a steam train for a week then I bounced back..I'm assuming I'll be on a platinum based chemo regimen but I don't even know if that runs all through the radiation process, at the end..etc. I haven't seen my treatment team since chemo and  I know I'll get lots of answers then but I have to plan ahead with the kids, you know how that is..

Any info would be so appreciated, thanks guys.

meaganb's picture
meaganb
Posts: 233
Joined: May 2012

Hey! I don't have a ton of good advice to offer because I had traditional radiation. I also did not have chemo. I have a daughter who is now 2, but was 11 months when I started Rads. After about 2 weeks of radiation I was not able to care for her myself. We had a friend come to oyr home while my husvand was at work to watch her. I basically went to treatment & then came home & slept the rest of the day. I did a quick search for proton radiation & it seems that this type is better at targeting the cancer while minimizing damage to surrounding tissue. I was in quite a bit of pain although I managed with hydrcodone, magic mouthwash & liquid lidocaine. I never had a feeding tube although eatibg was my least favorite thing to do by the end of treatment. It sounds like your Drs are giving you a great treatment option & I hope that its successful & that you're still able to manage during treatment. I guess whether or not you are able to care for your kids will depend on how old they are & how treatment affects you. Do you have any family that could come & stay with you during treatment to take some of the load off of you?

Skiffin16's picture
Skiffin16
Posts: 8096
Joined: Sep 2009

While I can't speak for proton therapy, I did go through a similar regime' with IMRT...

January - June 2009, STGIII Tonsils and a lymphnode. Three cycles (three weeks each) of Cisplatin, Taxotere and 5FU (TPF). Then like you and additional seven weeks of daily IMRT with weekly Carboplatin.

As you know, we are all different, so nobody here can tell you for sure what it'll be like for you.

Myself, it wasn't so bad and I worked entirely from home during that period. I do computer related work, and connected to my work computers... No loss time at all actually.

But there were days I definitely wasn't on a schedule..., mainly the chemo days.

Radiation for the H&N can be brutal, especially starting around week 3, lasting until a few weeks after (as you are still cooking so to say)... Most can't tolerate eating solid food, which lead many to a PEG, not all... Myself and a few others made it OK with out one.

But I did mainly survive on Ensure Plus and a few sliced peaches to keep the swallower working...

That also of course was preceeded with a spoonful of numbing solution, a few classes of water mixed in, and a crushed percocet to chase for any pain to follow.

My skin turned dark brown and peeld off...

But several have had it much worse than I did.

Also, in the H&N area and radiation, at least IMRT, you'll lose all or nearly all saliva and taste for several weeks at best, to nearly a year or two....

But eventually most all of us make it through with minimal side effects, a few lastinf longer than others..., but we survive.

Others will chime in, maybe a few that actually had proton therapy...

As for your children and caring doe them while going through treatment... I don't think I could do it alone... Your main objective will be you, and concentrating on surviving with as much rest and whatever it takes.

You can definitely have them in your life and be involved, and some days handle everything fine. But I'm sure there will also be days you just get by as best you can to survive another day.

Again, welcome...

Best,

John

fisrpotpe's picture
fisrpotpe
Posts: 1341
Joined: Aug 2010

i do not know anything about proton therapy or the side effects

 

i do know however, you are going to one of the very best hospital's with MD Anderson in the word. i sugest getting confortable with your doc's and go with their experience and knowledge.

 

prayers going out that it all works well for you and your three gorgeous kids(bears) 

 

john 

phrannie51's picture
phrannie51
Posts: 3784
Joined: Mar 2012

I remember getting Proton rads....and I can't!  Everything I've heard or read about it does say the side effects are less because it spares healthy tissue while targeting the tumor.

I think that the age of your kids will be the determining factor in getting help doing this....teenagers can help care for smaller kids....but I just don't know about energy levels doing concurrent rads along with chemo.  I always bounced back from from Cisplatin in about 5 days....I didn't bounce back from 5FU till the week before the next treatment. 

I'm thinking a Plan B would be the way to go....the first 2 or 3 weeks might be ok....but the last 3 or 4 could be overwhelming trying to care for more than yourself....with homeschooling on top of just caring for bears.  I've heard a lot of stories on here where kids really step up to the plate....amazing how grown up they can be when the chips are down.  The two or three weeks after rads are over you are still cooking (but you are at home among friends and family to help).

As John said....MD Anderson is the best hospital in the US for cancer.....so you are in good hands....

p

jedsnearlythere's picture
jedsnearlythere
Posts: 9
Joined: Aug 2013

Thanks so much everyone. The general consensus that I should figure out some help for about 2-3 weeks in confirms what I was thinking myself. Its really helpful to have that reinforced- thanks. And John, thank you for explaining in detail your journey with rads esp. It sounds like you handle platinum a bit better than I which is a helpful mirror to look into. 

Your prayers and your kind wishes, as you guys all know are so welcome at cancer time :)

when you're facing a threat to your very existence, you can never underestimate the healing power of another human being saying to you I'm routing for you. I'm behind you and I want you around. Even though I don't know you from Adam. Powerful. 

i'm ready. And you helped. Aren't you all awesome??? Yes you are. Be well my lovely cancer friends :) thank you for helping me.

debbiejeanne's picture
debbiejeanne
Posts: 2507
Joined: Jan 2010

we will b here ANYTIME u need help!!!

dj

hwt's picture
hwt
Posts: 1967
Joined: Jun 2012

Glad you found our site but sorry you had the need. I had an appt. to go to MDA for proton therapy (original cancer in jaw 01/2012 and now recurrance in carotid cavity) but ended up chosing the Mayo Clinic in Rochester, MN. for SBRT tx. I did some research and my doctor at Mayo spoke to the doc at MDA to see if they thought one tx was better for me than the other.  Basically, the SBRT was only 5 days, targets the tumor and then drops off quickly where proton therapy hits the tumor and stops which gives little in the way of residual damage to surrounding good tissue. 05/2012, I had 7 weeks of traditional radiation and the side effects were pretty hard on me. I believe MDA also does SBRT so if that was the best option for you, I'm sure they would have discussed it. Side effects for me this 2nd go around have been minimal. I finished tx last Friday.

Prayers for you and your family

Candi in St Louis

Skiffin16's picture
Skiffin16
Posts: 8096
Joined: Sep 2009

You definitely have mine, and I'm sure everyone here feels the same...

Attitude is huge going in and during treatment, you have a good one and that will take you far.

Everyone here is supportive, and you can come on here nearly 24/7 and ask questions, seek support, or just to vent..., nothing off limits in this forum or with this group of folks.

Best,

John

TracyLynn72's picture
TracyLynn72
Posts: 729
Joined: May 2013

Prayers each day!  I pray for my entire CSN "family" every single day :)  I'm also a homeschooler, but when I was going through treatments, my 16 year old just kept up with things online and his older brother helped out some.  Our second semester last school year was a little pitiful, but we had the summer to catch up...one of the many advantages of homeschool!  

Take care and I'll pray that your treatments aren't too bad and they go by quickly!  Keep us posted.  The people on here are SO helpful and kind.  They got me through my treatment and helped me more than they'll ever know :)

yensid683
Posts: 239
Joined: Apr 2012

but for prostate cancer.  He and I spoke before I started IMRT (SCC BOT, stage IVa) and he highly recommended it.  He discussed the very finely targeted effects and the mimimal (compared to IMRT) exit radiation and surrounding tissue damage.  He did not, as I recall, mention having chemo though.

He did say that he experienced fatigue, and would take walks along the beach (lives in Jacksonville FL) and it would help.  He was off of work at the recommendation of his medical team, but he said that the treatments were not debilitating. 

Compared to my experience, his was a cake walk.  I had 33 IRMT treatments that caused a sore throat that I described as similar to a freshly skinned knee, dragged over hot crushed glass and then mopped with a couple of coats of fire. 

One round of induction chemo (cisplatin caused kidney failure), 33 rounds or IMRT with weekly chemo (erbitux), three months off and then a selective neck dissection to remove several nodes that lit up on the scan.  Rads finished July 5 of 2012 and I've been back to work for a year now, am back to all my normal activities - I played 18 holes yesterday, walking the course and carrying my clubs, saliva is around 60%, I can eat just about anything and things are looking good.

I hope all turns out well for you, thoughts and prayers coming your way.

Peter

Skiffin16's picture
Skiffin16
Posts: 8096
Joined: Sep 2009

I can't personally say, and I'm far from a professional...

But I do know that it's been stated many times, and from my exposure, that H&N Treatment (especially radiation), is brutal...

I can't help but believe that most any radiation the the H&N is going to be brutal...

Unless Proton is extremely new, it would be offered to everyone..., other limiting factor also could be expense.... So I guess unless you were a millionaire, most couldn't afford it.

My treatment, before insurance, etc... was $275, 000..., about half of that being the IMRT and radiation portion.

JG

hwt's picture
hwt
Posts: 1967
Joined: Jun 2012

I do know that it is only up and running in very few places in the US. MDA, Jacksonville, FL, Indiana Univ, I think maybe Seattle and a few others. I do know that it is on the horizon for Stieman Cancer Center in STL and Mayo in MN.. I beleive Mayo expects to be up and running next year and Siteman has had theirs 5 years but it still is not in use. As I understand it, side effects are much less as is residual damage to good tissue. The tx is new enough that there are not long term results yet.  I think it is so directly targeted that it can only be used on specific isolated tumors but I maybe off base with that one.  

pogsfog's picture
pogsfog
Posts: 10
Joined: Sep 2013

I had Proton Therapy for a recurrence of Tonsil Cancer - Last two PET Scans show that it worked.   

Proton Beam Therapy is Much less damaging than radiation ( had that last time ).  Its the way to go - provided your insurance covers it - for some conditions  Proton Therapy is deemed experminetal and therefore not elegible for coverage.

I was able to drive myself to treatment ... began to notice side effects around 4 weeks after treatment ended. 

I still experienced Trismus and Mucousitis thou not as bad as last time.  

Currently I have a nasty radiation burn in my tonsil area - causing much discomfort.  But I can deal with that rather than something much worse.

Good luck to you !  Smile

jedsnearlythere's picture
jedsnearlythere
Posts: 9
Joined: Aug 2013

hello chaps,

 

just wanted to check in and share my treatment outcomes.

 

As you all (mostly) advised the treatment was indeed brutal especially at the end. I very nearly checked out bout five times due to complications, but I was told my regimen was all guns blazing apparently.

I am back in Houston for my first set of twelve week scans, post treatment end and I found out yesterday I am NED. It is all gone. Every last bit. HOW COOL IS THAT!!!!!!

 

Can't even describe how I feel - just wanted to share the encouraging news.

I'm still on the mend and have hit some funny complications but on the whole I'm up and around, beginning to taste a bit etc. will write more later. When I've stopped crying!!

 

Thanks again chaps lots of love xxxx

debbiejeanne's picture
debbiejeanne
Posts: 2507
Joined: Jan 2010

jed, NO CANCER!  what a great feeling!  we definitely understand how estatic you are and we share in your happiness!  i'm sorry you had complications and so glad you made it thru, how scared you must have been.  I'm very glad that's in your rear view mirror now and you're doing much better.  it is awesome that you can already taste some stuff!  it seemed like forever before I could taste.  It was many months for sure.  You sound like you are doing just great.  keep up the great healing and keep us posted on your healing.

God bless you,

dj

wmc's picture
wmc
Posts: 509
Joined: Jan 2014

Welcome and best of luck. I didn't have any Rad or chemo so can't help there. I always have extra prayers for someone going through this. Mine was surgery only SCC of the larynx T3 N0 MO.

Bill

debbiejeanne's picture
debbiejeanne
Posts: 2507
Joined: Jan 2010

Bill, my dx only said, "T3" but yours has NO MO, what does that mean.  I've noticed everyone else's dx show those letters also.  just curious.

dj

debbiejeanne's picture
debbiejeanne
Posts: 2507
Joined: Jan 2010

jed, what exactly is the esthesioneuroblastoma?  i've never seen that word before.

dj

debbiejeanne's picture
debbiejeanne
Posts: 2507
Joined: Jan 2010

jedsnearlythere, i gave my friend, PJ, your name.  she is going to join us here as a member and contact you.  her husband, Mel, had the same cancer you've got, i think.  i know he lost his nose.  she is a very kind and helpful person and will help you as much as she can.  she was Mel's caregiver so she knows all that he went thru and any complications he may have had.  feel free to ask them anything, they are glad to help and share their knowledge.

God bless you,

dj

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