Chemo - the gift that also (like radiation) keeps on giving

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Lisa90
Posts: 50
Joined: Tue Oct 13, 2015 4:26 pm

Re: Chemo - the gift that also (like radiation) keeps on giving

Postby Lisa90 » Thu Oct 15, 2015 12:32 am

I mentioned in my first ever post that if it weren't for this forum I'd never have been prepared for this chemo. The blank stares from Onc's seem to be a part of their job...

Funny thing is I've had cancer and chemo before. In 1992 at age 2 I was on very intense treatment for Rhabdomyosarcoma. Then at age 10 I was on very intense treatment for Osteosarcoma. Then again for Osteosarcoma in the other leg at age 21, which recurred at 23. Now, at 25 I have colon cancer. My current onc didn't even bother to check for it when I presented with symptoms because I'm supposedly too young to get it; and all he told me was that I might have some numbness and tingling in my hands and feet and not be able to drink or touch cold things, and compared to all my previous chemo, this FOLFOX course will be 'nothing'.

I finished my first round today, and I can say without a doubt this treatment has some of the worst side effects I've experienced so far. My jaw is locking, my eyes hurt, and I reek of chemo so soon. Now I find out in this thread that the neuropathy may be permanent? That really takes the cake.

I do feel onc's need to be more upfront about symptoms and especially long term ones. Sure, be grateful that you're still here (it's a heck of a ride and anyone who can make it through deserves huge bragging rights) but I don't think we should be kept in the dark about what our bodies will be like afterwards.

Best of luck with the lingering effects - I hope they are at least manageable at some point.

Raleigh
Posts: 114
Joined: Sun Aug 31, 2014 1:19 am
Location: Florida

Re: Chemo - the gift that also (like radiation) keeps on giving

Postby Raleigh » Tue Nov 03, 2015 11:03 pm

Cmewrrie- No I never did get any answers, and I still have no idea what that pain was from just after surgery, if that's what you mean.... Even after a battery of scans, etc... However there is hope... It's been many months since I posted that, and all of that pain has subsided at this point, completely and totally. Currently, I have no pain what so ever actually. Post surgery was for me the most difficult part of my cancer journey. Take it slow, I don't know exactly where he is at progresson wise with his cancer. But in my case, my pains eventually went away, at the time, I didn't think it would.
44 Yrs. Male
8/27/2014 Diagnosed colorectal cancer
Early stage 3
10/17/2014 - 28 rounds Rads/Chemo done
Resection / Illiostomy
Cancer free now since 9/2015

Nik Colon

Re: Chemo - the gift that also (like radiation) keeps on giving

Postby Nik Colon » Wed Nov 04, 2015 12:49 am

Yeah, it would have been nice to know! It truly sux!

Hapa
Posts: 388
Joined: Thu Jan 03, 2013 2:46 pm

Re: Chemo - the gift that also (like radiation) keeps on giving

Postby Hapa » Wed Nov 04, 2015 12:40 pm

My DH has extremely dry skin since treatment. Of course, he refuses to use any lotion . Also, he developed "old man' purple skin bruises. Have to try the lotion on Amazon. He hasn't seen eye doctor since beginning treatment- better make an appointment.

He also has many things that radiation caused. But, I am so thankful he is here 3 years after this whole thing started.
DH Stage 3 RC

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PGLGreg
Posts: 1427
Joined: Sat Nov 04, 2006 12:38 am
Location: Waimanalo, HI

Re: Chemo - the gift that also (like radiation) keeps on giving

Postby PGLGreg » Wed Nov 04, 2015 3:53 pm

Hapa wrote:Also, he developed "old man' purple skin bruises.

Think about grape seed extract capsules. I used to get these bruises (no surprise really, since I am actually an old man), but I noticed a report on some research that found evidence for grape seed extract ameliorating "venous fragility". So I bought a bottle of grape seed extract capsules and have been taking them for over a year. They're not very expensive. They seem to help.
Greg
stage 2a rectal cancer 11/05 at age 63
LAR 12/05 with adjuvant radiation+5FU,leucovorin 1-2/06
NED for 12 years, cured

Sams wife
Posts: 749
Joined: Sun Jan 11, 2015 2:49 pm

Re: Chemo - the gift that also (like radiation) keeps on giving

Postby Sams wife » Thu Nov 05, 2015 10:14 am

On the topic of eyes.
Do eyes just water & water. Hubby does think his eyes are getting worse but they were before chemo. Will be seeing dr tomorrow but I just thought I'd ask here.
Not sure if its normal for chemo but he can just bend over & tears start dripping. Kinda hard to work when you can't see :)
I'll just assume his hip is a little messed up already from radiation. He can cross one leg & not the other. I think it's the right one that he can't. It was a few months back when I read this post I had him check :(
Husband dx 1/13/15 St.2 CEA 7.1
Chemo/25rad 2/15 till 4/24/15
5FU/leucovorin
Surgery 6/8/2015 Stage IIa T3N0MX microscopic cancer left
Watching 4 lung spots
0/5 lymph nodes. Lap. APR
25% less 5FU/leucovorin 7/14/2015 x 26 CEA 3.4
25% more 5fu 9/2015
9/16/15 CEA 7.7
1/16/16 @ 9.2 during allergy?
3/16 New lung spot 4x4 mm
6/16 CEA 6.9 spot 5x5

Sams wife
Posts: 749
Joined: Sun Jan 11, 2015 2:49 pm

Re: Chemo - the gift that also (like radiation) keeps on giving

Postby Sams wife » Thu Nov 05, 2015 10:18 am

Lisa90 wrote:I The blank stares from Onc's seem to be a part of their job...


That's funny. I've noticed that too
Husband dx 1/13/15 St.2 CEA 7.1
Chemo/25rad 2/15 till 4/24/15
5FU/leucovorin
Surgery 6/8/2015 Stage IIa T3N0MX microscopic cancer left
Watching 4 lung spots
0/5 lymph nodes. Lap. APR
25% less 5FU/leucovorin 7/14/2015 x 26 CEA 3.4
25% more 5fu 9/2015
9/16/15 CEA 7.7
1/16/16 @ 9.2 during allergy?
3/16 New lung spot 4x4 mm
6/16 CEA 6.9 spot 5x5

Tarsal69
Posts: 51
Joined: Wed Oct 21, 2015 5:56 pm
Facebook Username: Howard Nelson

Re: Chemo - the gift that also (like radiation) keeps on giving

Postby Tarsal69 » Tue Nov 10, 2015 11:12 pm

111a dx on 7/23/15 colon resection 8/5/15 with folfox which I've completed 3 out of 6 treatments moderate hand an foot neuritis especially when exposed to cold when my 6 txs are done I'm done positive attitude let me know eat u think
Stage 111b t3n2m0 dx7/22/15
Cea pre 7.4 post resection 2.
Folfox 10/9/15 to 1/18/16 clinical trial 6 txs with Celebrex
Waiting for first post tx scan late March
Cat scan 7/24/15 pet scan7/27/15 clean for any metastasis
Dx resection 8/5/15

Ron50
Posts: 699
Joined: Fri Feb 10, 2006 7:04 pm

Re: Chemo - the gift that also (like radiation) keeps on giving

Postby Ron50 » Wed Nov 11, 2015 6:53 am

Hi Sams Wife,
I had chemo a long time ago. I initially had 5Fu and leucovorin but it hit me too hard and I was heading for renal failure. I changed to 5Fu and levamisole drug no longer used. I had it every Tuesday for almost a year. My onc was very upfront about the areas that it would aggravate. They were mainly the mucous membranes in the mouth and the tear ducts. I had my chemo via a bag and a canula in the back of the hand. To protect my mouth and eyes my onc got me to bring iceblocks to suck on and he supplied an ice pack that I put over my eyes. The cold reduced the blood flow and stopped some of the chemo reaching those areas. It seemed to reduce the aggravation. Ron.
dx 1/98
st 3 c 6 nodes
48 sessions 5Fu/levamisole
no recurrence cea <.5
numerous l/t side effects of chemo

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cmewrrie
Posts: 168
Joined: Fri Mar 13, 2015 9:03 pm

Re: Chemo - the gift that also (like radiation) keeps on giving

Postby cmewrrie » Wed Nov 11, 2015 7:50 am

Raleigh wrote:Cmewrrie- No I never did get any answers, and I still have no idea what that pain was from just after surgery, if that's what you mean.... Even after a battery of scans, etc... However there is hope... It's been many months since I posted that, and all of that pain has subsided at this point, completely and totally. Currently, I have no pain what so ever actually. Post surgery was for me the most difficult part of my cancer journey. Take it slow, I don't know exactly where he is at progresson wise with his cancer. But in my case, my pains eventually went away, at the time, I didn't think it would.


Thank you! He is now finding things are slooooowly improving, so hopeful his will completely resolve as well. Just frustrating that none of the doctors seem to have a clue on the root cause and/or treatment...I know everyone responds differently but you would think they would at least have encountered this a few times! Glad you are feeling better!
wife of DH (04/24/15 dx: age 43) Low RC T3N0M0 stage 2
4/27/15 clear CT
5/18 - 6/25 chemo/rad (ended xeloda on 6/19 due to side effects)
8/12/15 - ULAR scheduled - APR performed due to location - path showed T1N0M0
9/25 begin 5 rounds of xelox
10/30/15 - switch to xeloda only due to allergic reaction
1/22/16- last xeloda!
3/27/16 - post treatment CT - clear except soft tissue presacral area (possibly scar tissue) CEA .5
4/20/16 - post treatment colonoscopy

Sams wife
Posts: 749
Joined: Sun Jan 11, 2015 2:49 pm

Re: Chemo - the gift that also (like radiation) keeps on giving

Postby Sams wife » Wed Nov 11, 2015 8:45 am

Ron50 wrote:Hi Sams Wife,
I had chemo a long time ago. I initially had 5Fu and leucovorin but it hit me too hard and I was heading for renal failure. I changed to 5Fu and levamisole drug no longer used. I had it every Tuesday for almost a year. My onc was very upfront about the areas that it would aggravate. They were mainly the mucous membranes in the mouth and the tear ducts. I had my chemo via a bag and a canula in the back of the hand. To protect my mouth and eyes my onc got me to bring iceblocks to suck on and he supplied an ice pack that I put over my eyes. The cold reduced the blood flow and stopped some of the chemo reaching those areas. It seemed to reduce the aggravation. Ron.


Thank you. I didn't realize there was an answer here. Wonder if they will do anything for him. Dr just said ok, and looked at hands getting drier. I seem to remember something about Ice packs now. : ).
I put a hot rag on his eye the other day. Hope it wasn't wrong to do. Eye was just all matted. He will probably freak out if I put ice on him tho : )

I did put some olive oil on his hands. I told him hold your hands out. He said that will be the last time he falls for that trick, :) but after rinsing them off & feeling better he said " you might have to do that again". Will try something less greasy on feet. Or leave it on overnight with socks maybe.
He did say if this is the "easy" chemo he's not doing any others. Maybe it's hitting him harder.
Husband dx 1/13/15 St.2 CEA 7.1
Chemo/25rad 2/15 till 4/24/15
5FU/leucovorin
Surgery 6/8/2015 Stage IIa T3N0MX microscopic cancer left
Watching 4 lung spots
0/5 lymph nodes. Lap. APR
25% less 5FU/leucovorin 7/14/2015 x 26 CEA 3.4
25% more 5fu 9/2015
9/16/15 CEA 7.7
1/16/16 @ 9.2 during allergy?
3/16 New lung spot 4x4 mm
6/16 CEA 6.9 spot 5x5

Joy
Posts: 460
Joined: Wed Apr 12, 2006 6:33 pm
Location: Ontario, Canada

Re: Chemo - the gift that also (like radiation) keeps on giving

Postby Joy » Wed Nov 11, 2015 11:22 am

The good news is I am alive and will celebrate my 70 birthday this December.
The bad news severe neuropathy in legs and feet. (caused by chemo)
Swollen legs...making walking difficult (caused by chemo)
Incontinence... poop in pants frequently (caused by radiation/chemo)
Diagnosed with Chronic Kidney disease (caused by Chemo)
Diagnosed with MDS...anemia (caused by chemo)
Diagnosed with Chronic Lymph Leukemia (caused by chemo???)
Skin cancers...many surgeries...(caused by compromised immune system....chemo???)

I am NOT complaining
I take every day as a GIFT.
Grandma is happy :D
Joy
Stage III rectal cancer 2 nodes out of 19
LAR January 4th 2006
2 rounds of FOLFOX
28 continuous radiation with continuous 5FU
6 rounds of FOLFOX
NED


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