Partial radiation

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WifeOfMyGuy
Posts: 2
Joined: Tue Apr 10, 2018 4:43 pm

Partial radiation

Postby WifeOfMyGuy » Tue Apr 10, 2018 5:00 pm

Hi all! I've been quietly lurking here (read: taking in as much information as I possibly can) since my husband was diagnosed with stage 3b colorectal cancer in December.

The treatment plan laid out for us is this:
1) 6 rounds of chemotherapy using FOLFOX over 12 weeks
2) Radiation/chemo consisting of 28 days (M-F) over 6 weeks and xeloda
3) Surgery to remove remaining tumor/portion of the rectum impacted

He completed chemo and is on #14 of radiation/chemo. The side effects (especially from this second round) have been brutal.

So, my question, does anyone here have experience (or data I can dive into) with not completing ALL of the radiation treatment. We are wondering the overall impact if he were to discontinue radiation at this point and move to the surgery portion of this cancer journey.

Thanks in advance!

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chrissyrice
Posts: 1171
Joined: Thu Sep 23, 2010 8:44 am
Location: Atlanta, Georgia

Re: Partial radiation

Postby chrissyrice » Tue Apr 10, 2018 6:35 pm

Wife of Guy,
That is a great question. I believe it is one that is asked a lot here and at the doctors office.

Having experienced 12 rounds of first line chemo and then just recently radiation and xeloda for a recurrence of mCRC to my iliac and abdominal aorta.

I will tell you I wanted to die rather than finish those 28 radiation treatments. I asked both my oncologist and radiation doctor the same question.... please can we just stop the treatments and go straight to surgery?

I was so sick from the treatments I needed IV fluids twice a week along with bed rest. When I asked the question about stopping the doctors both answered no and understood it was not as easy as regular first line chemo. It was awful.

What they did for me was give me a break of a day or two and ordered the twice a week IV fluids... my potassium was always critically low. Going forward to complete the 28 rounds of chemo and radiation I did have the option to get to my appointment later in the day or skip a day when I was too nauseated to even raise my head.

I took Zofran and Emend around the clock to keep it at bay. Lots of water and the IV fluids too. Eating was a chore but baked potatoes (easy pickup from Wendy's) or bananas were my go to food along with Boost on crushed ice and yogurt.

So those 28 treatments got spread out a bit and the recovery was reassuring that I did complete the radiation. On December 20th, 2017, I had a successful 8+ hour surgery with 3 surgeons to reconstruct my iliac arteries, aorta resection, left kidney removal, small bowel resection. There was quite a bit of scar tissue and adhesions that needed to be removed as well. Parts of my large bowel were plastered to the abdominal wall and the tumor was rapped around the aorta and laying on my spine.

I was lucky that my blood loss was minimal and that a surprise blood clot was repaired and a stent placed to restore a good pulse to my left leg at the end of the surgery while I was still on the table. The doctors got clean margins this time and cleaned out all visible cancer. I am not doing mop up chemo as this would just be to hard on the body. I will be doing follow up scans every 3 to 6 months.

I hope my story is encouraging to your guy. This stuff is really really hard and a good outcome is my hope for him as well.

Chrissy
DX 10-31-09 Surgery 12-1-09 Sigmoid Colon
Stage IIIb T3,N2,MX; Chemo Feb 2010-Aug 2010; 4 rounds Folfox; 8 rounds 5FU +LV
12/2010 PET/CT Scan, Cancer Free
7/2012 CT Scan NED 2 years
10/2013 NED 3 years
8/2014 NED 4 years
Recurrence 6/2015: iliac lymph node(s)
8/2015 Surgery: 3 cm tumor removed+iliac artery graft
3/2016 CT Scan Stable
6/2016 Stable
9/2016 Stable
12/2016 Stable
3/2017 Stable
Recurrence 6/2017
12/2017 Surgery removed all cancer w/ clean margins
07-27-2018 Cancer-free for 7 months

retiredteacher
Posts: 114
Joined: Sat Oct 21, 2017 1:34 pm

Re: Partial radiation

Postby retiredteacher » Tue Apr 10, 2018 8:06 pm

Be sure he is communicating with his doctors - I needed to go on more powerful (RX) painkillers, a prescription strength anti-diarrheal. This stuff was not offered to me until I complained the OTC stuff was insufficient. Be sure he is adequately hydrating - mix in Pedialyte or GatorAde into his water. I needed IV H2O and Potassium. The last half of this treatment was no fun at all. If you have specific questions or more info on what you mean by "brutal" you may be able to get more useful answers. There is an RX silver cream and an OTC Recticare that really help with radiation burn in the anal areas. Also, I wish I had heeded advice abut cotton underwear - made a huge difference. This is a great place to get information, thoughtful advice, and support .... welcome!
RC F 63 9/17
Adeno 7 cm MSS G2 PET
T3N0M0
2.5K Cap/RT x 25
"Near complete response" PET 1/18
CEA 0.5 10/17, 0.6 10/18
MRI 2/18 yT2N0 12 cm fr AV 3 cm
LAR 2/18 yT1N0M0 0/21 G1 0.3 cm
CAPEOX 3/18, reduced to 80% at cycle 3
Completed 4 cycles; stopped, gut issues, liver enzymes
CT/ colonoscopy 11/18 NED
4/19 NED Sacral fractures/osteoporosis
"Caregiver" to the Iron Man
Hubby CRC Stage 3 2004 NED, Small Cell Lung Cancer Limited 2011 NED, Non-small Cell Lung Cancer 2019 NED October 2019

WifeOfMyGuy
Posts: 2
Joined: Tue Apr 10, 2018 4:43 pm

Re: Partial radiation

Postby WifeOfMyGuy » Wed Apr 11, 2018 5:05 am

Thanks for your response! I suppose I should have been more specific in the side effects.

He is in a lot of pain from the radiation. The pain feels internal he says. He has an urge to go to the bathroom all the time sometimes productive, sometimes nothing. The doctor called it spasms. He got a prescription suppository that doesn't seem to be helping. His stomach is cramping. He is not eating and forces himself to drink a bottle of water, a glass of milk and a mug of tea. His energy levels are very low. He doesn't sleep because of the urge to go to the bathroom.

He's been getting weekly IV fluids because he donated a kidney 10 years ago. That hasn't offered relief other than to take some pressure off his kidney.

We want to consider all of our options and do it from a risk-reward perspective. I'm curious if anyone has made the decision to stop radiation before the full 28 sessions.

As we see it there is a spectrum of options that range from continue on (and try to use tools available to alleviate side effects), to slow this down and spread the radiation out over a longer period of time, or to stop now.

Thanks again for your responses!! We are grateful!

NHMike
Posts: 2425
Joined: Fri Jul 21, 2017 3:43 am

Re: Partial radiation

Postby NHMike » Wed Apr 11, 2018 10:57 am

Radiation was tough but I would consider it easier than six rounds of FOLFOX. I had pain, holes, digestive issues and the feeling that I need to go but that all faded two weeks after it was over. It shrunk the tumor by over 90%.

There were a lot of time when the feeling that I needed to go was the tumor. It was hard to tell if you really needed to go or if the tumor gave you the feeling that you needed to go.

What helps is when you feel it getting smaller and can see pieces of it coming out. That was about three weeks for me.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8, 2/12 1.2
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal
2/19: Clean CT

User avatar
HopeForJesse
Posts: 249
Joined: Wed Feb 24, 2016 9:39 am
Location: Philadelphia

Re: Partial radiation

Postby HopeForJesse » Wed Apr 11, 2018 8:41 pm

chrissyrice wrote:Wife of Guy,
That is a great question. I believe it is one that is asked a lot here and at the doctors office.

Having experienced 12 rounds of first line chemo and then just recently radiation and xeloda for a recurrence of mCRC to my iliac and abdominal aorta.

I will tell you I wanted to die rather than finish those 28 radiation treatments. I asked both my oncologist and radiation doctor the same question.... please can we just stop the treatments and go straight to surgery?

I was so sick from the treatments I needed IV fluids twice a week along with bed rest. When I asked the question about stopping the doctors both answered no and understood it was not as easy as regular first line chemo. It was awful.

What they did for me was give me a break of a day or two and ordered the twice a week IV fluids... my potassium was always critically low. Going forward to complete the 28 rounds of chemo and radiation I did have the option to get to my appointment later in the day or skip a day when I was too nauseated to even raise my head.

I took Zofran and Emend around the clock to keep it at bay. Lots of water and the IV fluids too. Eating was a chore but baked potatoes (easy pickup from Wendy's) or bananas were my go to food along with Boost on crushed ice and yogurt.

So those 28 treatments got spread out a bit and the recovery was reassuring that I did complete the radiation. On December 20th, 2017, I had a successful 8+ hour surgery with 3 surgeons to reconstruct my iliac arteries, aorta resection, left kidney removal, small bowel resection. There was quite a bit of scar tissue and adhesions that needed to be removed as well. Parts of my large bowel were plastered to the abdominal wall and the tumor was rapped around the aorta and laying on my spine.

I was lucky that my blood loss was minimal and that a surprise blood clot was repaired and a stent placed to restore a good pulse to my left leg at the end of the surgery while I was still on the table. The doctors got clean margins this time and cleaned out all visible cancer. I am not doing mop up chemo as this would just be to hard on the body. I will be doing follow up scans every 3 to 6 months.

I hope my story is encouraging to your guy. This stuff is really really hard and a good outcome is my hope for him as well.

Chrissy



Sorry - I am never good with the quoting here but just wanted to say congrats on getting through the surgery and radiation. Wishing you NED for 2018 and beyond!
DH DX 01/16 49 YO inop RC stage IV liver mets
MSS TP53 APC,BRCA2
12/15 CEA 241, FOLFOX to 11/16
LAR/ileo 5/16 Clear margins 1/29 nodes
HAI, reversal, liver resections7/16
FUDR 8/16 -NED 3 mos
Rising CEA 3/17 Xeloda, 5/17 -12/17 Erbitux & Iri stable but lung/lymph mets CEA 2.7
5/18 5 days SBRT radiation to sternum 10/22/18 surgery to remove zyphoid process met
6/11/19 5FU added to cetuximab and irinotecan CEA 16
Ephesians 3:20 Our God is able to do immeasurably more than we can ask or imagine!

retiredteacher
Posts: 114
Joined: Sat Oct 21, 2017 1:34 pm

Re: Partial radiation

Postby retiredteacher » Wed Apr 11, 2018 9:32 pm

I will look for some articles for you - my radiologist was very emphatic about avoiding milk products - he said the radiation creates a lactose intolerance - this could be adding to his discomfort. Also, I am wondering if he isn't cruising into a malnourishment situation which could get worse. I can relate. My radiologist was again very adamant that I consume the Ensure - the new Enlive is much better tasting than the original, if you can get it, but even if you can't suggest he add this to his diet. Is he finishing 2 - 3 liters liquid daily? I took Lomotil (diphenoxylate hydrochloride with atropine sulfate) which straightened out the diarrheal problems when the over the counter failed.
Terri
RC F 63 9/17
Adeno 7 cm MSS G2 PET
T3N0M0
2.5K Cap/RT x 25
"Near complete response" PET 1/18
CEA 0.5 10/17, 0.6 10/18
MRI 2/18 yT2N0 12 cm fr AV 3 cm
LAR 2/18 yT1N0M0 0/21 G1 0.3 cm
CAPEOX 3/18, reduced to 80% at cycle 3
Completed 4 cycles; stopped, gut issues, liver enzymes
CT/ colonoscopy 11/18 NED
4/19 NED Sacral fractures/osteoporosis
"Caregiver" to the Iron Man
Hubby CRC Stage 3 2004 NED, Small Cell Lung Cancer Limited 2011 NED, Non-small Cell Lung Cancer 2019 NED October 2019

retiredteacher
Posts: 114
Joined: Sat Oct 21, 2017 1:34 pm

Re: Partial radiation

Postby retiredteacher » Wed Apr 11, 2018 9:45 pm

Here are a couple articles - mostly about managing adverse symptoms, and not answering your question re: modifying the radiation schedule. Hope he can get to some relief soon!


https://www.meb.uni-bonn.de/cancer.gov/ ... 62743.html

https://www.healthline.com/health/radia ... #treatment
RC F 63 9/17
Adeno 7 cm MSS G2 PET
T3N0M0
2.5K Cap/RT x 25
"Near complete response" PET 1/18
CEA 0.5 10/17, 0.6 10/18
MRI 2/18 yT2N0 12 cm fr AV 3 cm
LAR 2/18 yT1N0M0 0/21 G1 0.3 cm
CAPEOX 3/18, reduced to 80% at cycle 3
Completed 4 cycles; stopped, gut issues, liver enzymes
CT/ colonoscopy 11/18 NED
4/19 NED Sacral fractures/osteoporosis
"Caregiver" to the Iron Man
Hubby CRC Stage 3 2004 NED, Small Cell Lung Cancer Limited 2011 NED, Non-small Cell Lung Cancer 2019 NED October 2019

aja1121
Posts: 214
Joined: Sat Jun 28, 2014 5:12 pm

Re: Partial radiation

Postby aja1121 » Thu Apr 12, 2018 12:33 pm

Would his doctors be willing to prescribe Valium or Ativan to help with sleep for the next couple weeks?
05/23/14 DH dx Stage 3B rectal ca (age 41)
6/2014 chemorad | 10/2014 LAR, all nodes clean
FOLFOX x 10 | VATS/lung met | ileo reversal
09/15 local recurrence
10/15 colostomy
11/15 FOLFIRI x 4, major growth
02/16 tumor debulked
Stable ten months on Xeloda/Avastin
Growth on clinical trials NCT02024607 (BBI608 + FOLFIRI), NCT02817633 (anti-PD-1 + anti-TIM-3), NCT03175224 (c-Met inhibitor)
09/27/2018 started hospice
02/07/19 died

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SilverWedding
Posts: 71
Joined: Sat May 18, 2019 5:54 am
Facebook Username: Cynthia Harding Marshall

Re: Partial radiation

Postby SilverWedding » Wed Jun 26, 2019 4:46 pm

NHMike wrote:Radiation was tough but I would consider it easier than six rounds of FOLFOX. I had pain, holes, digestive issues and the feeling that I need to go but that all faded two weeks after it was over. It shrunk the tumor by over 90%.

There were a lot of time when the feeling that I needed to go was the tumor. It was hard to tell if you really needed to go or if the tumor gave you the feeling that you needed to go.

What helps is when you feel it getting smaller and can see pieces of it coming out. That was about three weeks for me.


Your story is so encouraging right now. Chemo radiation just began, and my husband is already sick and in pain - and i don’t dare share with him how it gets worse. Tonight i am ordering some cream I read on heat that works well for some - it’s CALMOSEPTINE. Any thoughts on that?

Also, my husband feels he has to go all the time, but it’s the tumor much of the time that is giving him that sensation. Did you mean you actually saw parts of the tumor break off!? I wanted to alert him if so. Maybe it will be at least a little encouraging.

Did you use a bidet? Do you recommend one? I could get it set up now.

Thanks for any advice from you (all).

Cynthia
DH, 56, Sigmoid & rectum
Adenocarcinoma 2cm
 G2: Moderately differentiated
T3N2aM0
Stage IIIb
LN 6/22
5/19 Baseline CEA value - 18.9
Lymphovascular invasion (LVI): present
Perineural invasion (PNI): not identified
Surgical margins: proximal -negative; distal - negative 1.5cm; circumferential - negative 1mm)
MSI status: Waiting‬
Lynch status: ?
KRAS/BRAF: ?
Open Restorative Proctectomy, J-Pouch Coloanal Anastomosis, Loop Ileo w/Appendectomy
Neo-adjuvant Xeloda/radiation
Adjuvant Chemo: to begin 11/19

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juliej
Posts: 3106
Joined: Thu Aug 05, 2010 12:59 pm

Re: Partial radiation

Postby juliej » Wed Jun 26, 2019 5:46 pm

First of all, calmoseptine is awesome! It really helps with the burning and pain from bad diarrhea.

And yes, it's undoubtedly the tumor that's giving him the sensation of having to go all the time. The tumor will start shrinking in just a few weeks and he'll feel so much better then. It also makes it much easier physiologically to handle the radiation/chemo since you realize it's killing the beast!

A bidet is expensive but a wonderful luxury! Several people on the forum have used the brand BioBidet. It's easy to install as it simply replaces a regular toilet seat.

Medical marijuana can also help with the pain and fatigue if he's into that.

Juliej
Stage IVb, liver/lung mets 8/4/2010
Xelox+Avastin 8/18/10 to 10/21/2011
LAR, liver resec, HAI pump 11/2011
Adjuvant Irinotecan + FUDR
Double lung surgery + ileo reversal 2/2012
Adjuvant FUDR + Xeloda
VATS rt. lung 12/2012 - benign granuloma!
VATS left lung 11/2013
NED 11/22/13 to 12/18/2019, CEA<1

NHMike
Posts: 2425
Joined: Fri Jul 21, 2017 3:43 am

Re: Partial radiation

Postby NHMike » Wed Jun 26, 2019 6:59 pm

SilverWedding wrote:
NHMike wrote:Radiation was tough but I would consider it easier than six rounds of FOLFOX. I had pain, holes, digestive issues and the feeling that I need to go but that all faded two weeks after it was over. It shrunk the tumor by over 90%.

There were a lot of time when the feeling that I needed to go was the tumor. It was hard to tell if you really needed to go or if the tumor gave you the feeling that you needed to go.

What helps is when you feel it getting smaller and can see pieces of it coming out. That was about three weeks for me.


Your story is so encouraging right now. Chemo radiation just began, and my husband is already sick and in pain - and i don’t dare share with him how it gets worse. Tonight i am ordering some cream I read on heat that works well for some - it’s CALMOSEPTINE. Any thoughts on that?

Also, my husband feels he has to go all the time, but it’s the tumor much of the time that is giving him that sensation. Did you mean you actually saw parts of the tumor break off!? I wanted to alert him if so. Maybe it will be at least a little encouraging.

Did you use a bidet? Do you recommend one? I could get it set up now.

Thanks for any advice from you (all).

Cynthia


I did not use anything for radiation but I did order Calmoseptine, Cavilon Barrier Cream, and Lantiseptic Skin Protectant after the reversal. I only opened and used the Lantiseptic and that worked quite well - I never did try the other two products though they are somewhere in the house. Cavilon and Lantiseptic are barrier products - they work by preventing stool from touching the skin. Stool can be quite caustic to the skin. I don't recall what Calmoseptine does. All three were recommended for after the reversal by people on this board so I bought all three.

The tumor coming off looked like white flakes in the toilet. Sometimes they had a little red in them.

I didn't use a bidet. I can see the benefit of using them as toilet paper is pretty rough on the skin after a while. If he uses toilet paper, I'd recommend dabbing as opposed to wiping. I also used Depends Shields. These are men's pads which can prevent small amounts from soiling underwear. I imagine that women's thin pads would work as well.

After the reversal, I bought three sets of Perineal Lavette bottles. These bottles are typically given to women after childbirth to clean without having to wipe and they work like a bidet - but you can carry them with you. I bought a small medical kit and I carry these bottles around in that medical kit along with pads, plastic bags and two diapers. It's basically an emergency kit. I don't use the latter things very often but use the peristalsis bottles daily.

One other thing that I'd recommend is a seat cushion similar to https://www.amazon.com/gp/product/B01EB ... UTF8&psc=1 as it takes pressure off the area getting the radiation.

Perineal Lavette bottles: https://www.amazon.com/gp/product/B07B9 ... UTF8&psc=1

Calmoseptine Cream: https://www.amazon.com/gp/product/B00BC ... UTF8&psc=1

Cavilon Barrier Cream: https://www.amazon.com/3M-Cavilon-Durab ... hpc&sr=1-4

Lantiseptic Cream: https://www.amazon.com/Lantiseptic-Orig ... 140&sr=1-3

I'd recommend getting the okay from your husband's radiologist before using any of the creams.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8, 2/12 1.2
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal
2/19: Clean CT

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Green Tea
Posts: 202
Joined: Mon Oct 24, 2016 10:48 am
Location: Nusa Tenggara

Re: Partial radiation

Postby Green Tea » Wed Jun 26, 2019 9:59 pm

NHMike wrote:... I'd recommend getting the okay from your husband's radiologist before using any of the creams.

I agree with NHMike. This is because Calmoseptine contains 20% zinc oxide. The radiologist should know whether this is OK or not.


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