My Chemo/Radiation notes

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kellywin
Posts: 492
Joined: Wed Jan 23, 2013 4:46 pm
Location: Northern CA

Re: My Chemo/Radiation notes

Postby kellywin » Wed Mar 30, 2016 6:17 pm

Glad things are going well for you!
Kelly, mom 14 yo girl
Dx 11/15/12 Rectal Cancer @ age 40
Stage IIIC
5.5 weeks Xeloda & Radiation - complete 2/5/13
Colectomy 3/12/13, 7 of 14 nodes positive - no ileo
4/24/13-8/20/13 - 5 rounds Xelox, 1 Xeloda only

AppleTree
Posts: 267
Joined: Fri Mar 18, 2016 8:16 am

Re: My Chemo/Radiation notes

Postby AppleTree » Mon Apr 04, 2016 3:55 pm

Week 4

Today marked the beginning of week 4.

As Iong as I watch what I eat and have small portions, I have no runs. Yeah.

I am using all my creams. My favorite is moisture barrier cream, as my skin has 1 irritated, slightly raw spot that hurts like crazy if urine gets on it. Fortunately it is small.

Over the weekend I noticed my urine coming out slowly, but more forcefully, with a little pain. Last night (Sunday), very, very painful...especially after the fact which made my back spasm. School was 8-10:30 today and I had my DH pick me up and drop me off at the hospital. Pain med RX and another RX for bladder spasms have been added to my current list of meds. Urine test to test for bladder infection before an antibiotic is prescribed. Not like I am not going to be there tomorrow for radiation anyway and with the pain under control, I can wait for the lab results. My radiation is at 6pm, but since I was already there, they fit me right in so I wouldn't have to go back again 2x in one day. It sure was nice to have a "night off". I asked about bladder damage, but radiation DR says that the beams can not be repositioned for me and hopefully this is just short term. She seems to think I am doing fine, 4 weeks into treatment. I always have radiation with a full bladder. Trying not to over worry and drinking plenty of water to try to keep things flushed out.

Over the weekend I got plenty of walking exercise in, out enjoying the nice weather. Brought my son to a big outdoor museum on Sunday. I am leary of eating out so we generally pack picnics with food I know won't send me running to a toilet. I even have thermoses for ice and hot soup. I need extra rest and a nap, but so far, I think I am doing pretty good.
Diag Feb 5, 2016 Age 45
3 cm tumor 5 cm from verge
Radiation + Xeloda pills - 3000mg 5x week
3/14 - 4/16 - 25 sessions
Shrank just over 50% L nodes 0/13
Remove rectum with temp Ileo 6/17
Reversal 7/20 due to infection
Acute hepatitis August. Chemo cancelled
June to September 2016 - 58 days in hospital

2017
6/16, MRI shadow in lung
Pet - 6.6mm Met in Upper R lobe
7/30 VAT surgery Mass General/Boston
8/24 port
8/30 - 4/28 Folfox. 12 rounds
2018
June CT shows new lung Mets.
July/Oct PETs...CLEAR!

AppleTree
Posts: 267
Joined: Fri Mar 18, 2016 8:16 am

Re: My Chemo/Radiation notes

Postby AppleTree » Fri Apr 08, 2016 3:05 pm

End of week 4

20 sessions finished! 1 more week to go. I noticed an increase in being tired this week. Otherwise, my side-effects have been holding steady. If I go off small, bland meals...I pay for it! I posted at the beginning of the week, and I would say I am doing about the same. Creams for my skin and painkiller (so I can pee!) are working as they should.
Diag Feb 5, 2016 Age 45
3 cm tumor 5 cm from verge
Radiation + Xeloda pills - 3000mg 5x week
3/14 - 4/16 - 25 sessions
Shrank just over 50% L nodes 0/13
Remove rectum with temp Ileo 6/17
Reversal 7/20 due to infection
Acute hepatitis August. Chemo cancelled
June to September 2016 - 58 days in hospital

2017
6/16, MRI shadow in lung
Pet - 6.6mm Met in Upper R lobe
7/30 VAT surgery Mass General/Boston
8/24 port
8/30 - 4/28 Folfox. 12 rounds
2018
June CT shows new lung Mets.
July/Oct PETs...CLEAR!

AppleTree
Posts: 267
Joined: Fri Mar 18, 2016 8:16 am

Re: My Chemo/Radiation notes

Postby AppleTree » Sat Apr 16, 2016 2:57 pm

Week 5
Week 5 - no fun! My skin is seriously itching so badly that it hurts. Plus I have some very sore spots. DR said I could take 1 more dose pain med a day. Nurses swung into action with a battery of creams, guaze, wound packing thing. Plus I have my own creams at home. And everything should start getting better now that chemo/radiation is finished.

Week 5 food...mostly elbow macaroni in broth. Some toast. Rice cakes. Tea. Any change had me running to the bathroom. But, I could eat. Small portions.

No long walks this weekend. I am happy to stay in bed and watch sappy movies.

But I did it. 5 weeks. First 3 weeks weren't that bad. I am so very happy it was over at week 5.

And that is my journal of 5 weeks. Hopes it helps someone.
Diag Feb 5, 2016 Age 45
3 cm tumor 5 cm from verge
Radiation + Xeloda pills - 3000mg 5x week
3/14 - 4/16 - 25 sessions
Shrank just over 50% L nodes 0/13
Remove rectum with temp Ileo 6/17
Reversal 7/20 due to infection
Acute hepatitis August. Chemo cancelled
June to September 2016 - 58 days in hospital

2017
6/16, MRI shadow in lung
Pet - 6.6mm Met in Upper R lobe
7/30 VAT surgery Mass General/Boston
8/24 port
8/30 - 4/28 Folfox. 12 rounds
2018
June CT shows new lung Mets.
July/Oct PETs...CLEAR!

Ajane
Posts: 427
Joined: Tue Jul 23, 2013 3:03 am

Re: My Chemo/Radiation notes

Postby Ajane » Sun Apr 17, 2016 12:21 am

AT, no fun, but you made it through it! Thanks for posting your "notes." I know they'll be helpful to other newbies treading this route. I hope you're able to get back to enjoying the outdoors a bit during the interium time before the next phase. Looking forward to seeing positive results from your surgery.
7/13, T2, G3, Ultra-low. CEA 5.7 KRAS Wild, MSS
8-9/13 6 wks Xeloda/radiation
12/13 TEM pCR NED
5/15 CEA 4.6 PET 1.5 cm met, UL Lobectomy
6-10/15: Rounds 1-2 Xelox+Avastin; 3-8 Folfox+Avastin
10/15-4/16: 12 rounds Avastin
9/2016 CEA 4.2, 12 mm AP node
11/2016 CEA 4.3. PET/CT. 16mm AP nodal met removed
4 wks chemorad
2/2017 NED CEA 2.4
Carafate to tx esophageal ulcers caused by rad
Avastin maintenance postponed

2 Corinthians 12:9

Nik Colon

Re: My Chemo/Radiation notes

Postby Nik Colon » Sun Apr 17, 2016 12:58 am

Yes, it's great to post so others can see. I have my own tx thread which I mainly created to inform others and so I wouldn't forget, lol. Mine include folfox and folfiri and such in between and end. I didn't have RC so mine is about tx and CC (stage 4)

AppleTree
Posts: 267
Joined: Fri Mar 18, 2016 8:16 am

Re: My Chemo/Radiation notes

Postby AppleTree » Sun Apr 17, 2016 12:00 pm

Well, Saturday got progressively worse. #1, I was so tired I stayed in bed ALL day, literally. But then pain/itching started at night. Add crazy, random bee sting like pains. I went to the hospital today (Sunday) and they offered to admit me for IV pain med. I declined. So, they up-ped my pain dose, gave me a stronger anti-spasm med and some new cream. They said it is mostly from internal burns and to give it 7-10 days since the radiation keeps working for a bit after stopping therapy. So, I hope this really is the end and I will be feeling better in a week.

I would recommend telling your team about any/all problems as they arise and chances are they will have some sort of remedy to help you out. Don't suffer. I have learned that my team is quick to change my dose or the medicine or the cream as soon as I tell them that something isn't working so good anymore.

Thanks for all the well wishes!
Diag Feb 5, 2016 Age 45
3 cm tumor 5 cm from verge
Radiation + Xeloda pills - 3000mg 5x week
3/14 - 4/16 - 25 sessions
Shrank just over 50% L nodes 0/13
Remove rectum with temp Ileo 6/17
Reversal 7/20 due to infection
Acute hepatitis August. Chemo cancelled
June to September 2016 - 58 days in hospital

2017
6/16, MRI shadow in lung
Pet - 6.6mm Met in Upper R lobe
7/30 VAT surgery Mass General/Boston
8/24 port
8/30 - 4/28 Folfox. 12 rounds
2018
June CT shows new lung Mets.
July/Oct PETs...CLEAR!

mike1965
Posts: 118
Joined: Mon Jan 25, 2016 11:07 pm

Re: My Chemo/Radiation notes

Postby mike1965 » Sun Apr 17, 2016 7:01 pm

Thanks for your updates. I have found them helpful. I start chemo on Tuesday. Praying that your future treatment goes well.
Colonoscopy 09/06/15 Doctor removed polyp
DX - Rectal cancer 09/10/2015 T1M0N0
Surgeon recommended wait and see approach 09/2015
Tumor board recommended LARs Surgery 10/2015
Oncologist and PCP recommended LARs Surgery 11/2015
Seeking 2nd opinion from another Surgeon 01/2016
Having Sigmoidscopy on 02/01/16.
Figured out treatment 02/2016
LARS Surgery 03/2016
Stage 3A T1 N1C M0
Chemo Folfox to begin 04/18/16

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Youngjen81
Posts: 47
Joined: Thu Feb 25, 2016 9:46 am

Re: My Chemo/Radiation notes

Postby Youngjen81 » Fri Apr 22, 2016 11:22 pm

Appletree,
Hope your pain and discomforts are improving. Just curious, are you having bladder symptoms? Our treatments ran about the same time, mine finished on 4-18.
The urinary pain for me is ridiculous!
Best of luck to you!
Jen
Diagnosed at 35 after 8 years of symptoms
T3n1m0, clinical diagnosis, suspicious spot on iliac crest and left lower lung, unchanged
28 radiation, with Xeloda 3000 mg
LAR with temp ileostomy 6-21-16, pCR!
Ileus and blockage, 12 day hospital stay
Port placement 7-26-16
Fofox begins 8-2-16
Mom to 4 boys(2, 10, 11, 22) they are my world!
Mother diagnosed 5/2016
Clinical stage t3n2m0, cysts on liver and kidneys
Last day of chemoradiation 7-28-16, can't wait! It's hard seeing my Mom in pain

AppleTree
Posts: 267
Joined: Fri Mar 18, 2016 8:16 am

Re: My Chemo/Radiation notes

Postby AppleTree » Sun Apr 24, 2016 4:03 pm

Jen - yes, painful urination! DR gave me anti-spasm medication, plus pain med. Hurts also to have a bowel movement - I try to time that around my pain med dosage! Drinking extra water seems to help because then the urine isn't so strong...but on the flip side - I have to go more! Basically, the strength of the flow is reduced so it takes longer to fully go...and it hurts too. And then the pain got worse as time went on, so DR increased pain med. I mean, I was running for the bed and writhing in agony for about 4 minutes after going. Yeah, DR said to definitely increase pain med and that helps. I have been trying to reduce my pain med a bit and extended it out a bit too...testing to see if it still hurts - yup - it does! They have done 2 urine tests, so urinary tract infection is ruled out. I am hoping things are just swollen and irritated and maybe in another week it will get better. If I do not take the anti-spasm medication, then when I SEE the toilet, I can not get my pants down in time. So, the medicine helps with the control issue too.

Last Saturday, I was really wiped out. This Saturday, we went to the mall for a short while and out for lunch...even stepped foot into a grocery store for a few quick things. My appetite is returning! That all exhausted me and I then watched a movie in bed - but it definitely was an improvement over last week. So, I know I am getting better. My big surprise was the week after radiation stopped seemed to be the worst week (well, Week 5 was no picnic either, but in a way I expected that). No energy, burns, pain (especially going to the bathroom), infernal itching, lordy!... On Friday the DR gave me a new cream to insert up inside my vagina at bedtime. I think this really helped with the internal itching. Creams, pain med, the anti-spasm medicine...keep yacking at your DRs and they hopefully will come up with something to give you relief...while time takes its course.

And today when I rubbed at what I thought was a dirty patch of skin - it all came off. Ouch! Like a sunburn peeling. So, no more rubbing at discolored skin. Fortunately, it was just a small bit and I am leaving the rest alone! Be careful showering and drying off! Just dab, dab, dab dry. No rubbing!

Best wishes to you. My MRI is May 24th ...5 weeks after the stop of my therapy. Then I will find out how well/if the therapy worked.
Diag Feb 5, 2016 Age 45
3 cm tumor 5 cm from verge
Radiation + Xeloda pills - 3000mg 5x week
3/14 - 4/16 - 25 sessions
Shrank just over 50% L nodes 0/13
Remove rectum with temp Ileo 6/17
Reversal 7/20 due to infection
Acute hepatitis August. Chemo cancelled
June to September 2016 - 58 days in hospital

2017
6/16, MRI shadow in lung
Pet - 6.6mm Met in Upper R lobe
7/30 VAT surgery Mass General/Boston
8/24 port
8/30 - 4/28 Folfox. 12 rounds
2018
June CT shows new lung Mets.
July/Oct PETs...CLEAR!

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WriterGirl1969
Posts: 513
Joined: Sat Mar 05, 2016 3:48 pm
Location: Central NY

Re: My Chemo/Radiation notes

Postby WriterGirl1969 » Wed Apr 27, 2016 6:32 pm

mike1965 wrote:Thanks for your updates. I have found them helpful. I start chemo on Tuesday. Praying that your future treatment goes well.


I echo this sentiment. I came in tonight looking for something like this, as it is a little nerve-wracking to know this begins for me tomorrow (4/28). I knew I'd find useful info here. Thank you for posting this! :)

Mike, I know we're pretty close in timing as I recall you posting to me from the hospital when I was first diagnosed. How's it going for you so far?

--Tracy
DX 3/4/2016 Colon Cancer; age 46 Mom of then 4-yr-old
Stage IIIB: T3N1M0
3/31/16 Surgery
4 to 10/2016: Xeloda Monotherapy
CEA: 10/16 0.56, 1/17 0.54
CT CLEAR: 3/6/17; 4/17/18; 4/16/19
NED 3 years
“If I can help somebody as I walk along, then my living shall not be in vain.”

AppleTree
Posts: 267
Joined: Fri Mar 18, 2016 8:16 am

Re: My Chemo/Radiation notes

Postby AppleTree » Thu Apr 28, 2016 2:37 pm

Update on post-radiation pain:
7 days after chemo/radiation stopped, I was still experiencing lots of pain going to the bathroom, still itching like crazy, etc. Pain med, spasm med and creams needed!

12 days after - completely off pain/spasm meds! No more internal itching! Just using a small bit of cream on external skin that is similar to an old sunburn. I was thinking after 7 days, I should be off the meds, but my body wasn't following that train of thought. So, be nice to yourself and accept it may take longer than you want, but every day there is a bit of progress.

It gets better. I know it is hard to believe when you are going through it, but it does get better.

Today is day 13. Maybe I did too much yesterday, I sure am TIRED today. So, mostly rested today, other than going to my Uni clasd, laundry, help son with homework and a few odds and ends. Let the housework slide a bit, if needed. Opt for easier meals. Tomorrow is another day.
Diag Feb 5, 2016 Age 45
3 cm tumor 5 cm from verge
Radiation + Xeloda pills - 3000mg 5x week
3/14 - 4/16 - 25 sessions
Shrank just over 50% L nodes 0/13
Remove rectum with temp Ileo 6/17
Reversal 7/20 due to infection
Acute hepatitis August. Chemo cancelled
June to September 2016 - 58 days in hospital

2017
6/16, MRI shadow in lung
Pet - 6.6mm Met in Upper R lobe
7/30 VAT surgery Mass General/Boston
8/24 port
8/30 - 4/28 Folfox. 12 rounds
2018
June CT shows new lung Mets.
July/Oct PETs...CLEAR!

mike1965
Posts: 118
Joined: Mon Jan 25, 2016 11:07 pm

Re: My Chemo/Radiation notes

Postby mike1965 » Thu Apr 28, 2016 2:44 pm

WriterGirl 1969 I am finishing up my first round of chemo. It went pretty good. I just had to recover from the insertion of the port and get use to the pump on for two days. I had to figure out what to eat and drink. I did drink lots of water and exercise some. Eleven more rounds to go I am taking one day at a time. I picked up a book called Chemo survival guide and it was very helpful. I continue to pray all goes well with your treatment
Colonoscopy 09/06/15 Doctor removed polyp
DX - Rectal cancer 09/10/2015 T1M0N0
Surgeon recommended wait and see approach 09/2015
Tumor board recommended LARs Surgery 10/2015
Oncologist and PCP recommended LARs Surgery 11/2015
Seeking 2nd opinion from another Surgeon 01/2016
Having Sigmoidscopy on 02/01/16.
Figured out treatment 02/2016
LARS Surgery 03/2016
Stage 3A T1 N1C M0
Chemo Folfox to begin 04/18/16

AppleTree
Posts: 267
Joined: Fri Mar 18, 2016 8:16 am

Re: My Chemo/Radiation notes

Postby AppleTree » Thu Apr 28, 2016 3:15 pm

Mike, glad to hear your first week went well. I was so nervous the first week...I think my nerves were worse than the chemo!

And Writer Girl - best wishes to you these coming weeks!
Diag Feb 5, 2016 Age 45
3 cm tumor 5 cm from verge
Radiation + Xeloda pills - 3000mg 5x week
3/14 - 4/16 - 25 sessions
Shrank just over 50% L nodes 0/13
Remove rectum with temp Ileo 6/17
Reversal 7/20 due to infection
Acute hepatitis August. Chemo cancelled
June to September 2016 - 58 days in hospital

2017
6/16, MRI shadow in lung
Pet - 6.6mm Met in Upper R lobe
7/30 VAT surgery Mass General/Boston
8/24 port
8/30 - 4/28 Folfox. 12 rounds
2018
June CT shows new lung Mets.
July/Oct PETs...CLEAR!

Pyro
Posts: 305
Joined: Mon Oct 12, 2015 7:40 pm
Location: Tucson, AZ

Re: My Chemo/Radiation notes

Postby Pyro » Fri Jun 17, 2016 10:39 pm

I have been doing chem/rad for 5 days now and I'm wondering what to expect in the next few weeks. I'm male, which makes somethings different in relation to the above posts, but I know not all radiation is the same. My rad onc told me to expect no skin problems due to the type of treatment I'm getting. The machine does a side x-ray, then a top x-ray all while I lay on my stomach. The machine then does two 1 minute passes all around my torso, never stopping in one place, does this sound familiar? Thanks for you help!
Aug 2015- Stage 4 CC with liver Mets(38/m)
Sep 2015- Avastin/Folfox/Iron
Dec 2015-Not liver surgery candidate
Jan 2016- Erbitux/Folfiri, 2nd opinion at MDA in TX
Feb 2016 -MDA liver surgery
Mar 2016 -30% of left lobe rem, PVE
May 2016 - 70% of liver rem
Jun 2016-Rad
Jan 2017-perm colost @MDA
Jul 2017-Erb/FOLFURI
Nov 2017 -Lung & Liver ablations@MDA
Jan 2018 -Xeloda & Avastin mx
Jul 2018-Avast/FOLFURI
Sep 2018-Rad
Mar 2019 - Keytruda fail
Jun 2019 - FOLFURI
Aug 2019 - No more, quality time!


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