WTF!! A little advice please

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Seriously, WTF?
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WTF!! A little advice please

Postby Seriously, WTF? » Wed Oct 10, 2012 7:24 am

I'm taking the lazy way out! I don't feel like looking at old posts or googling information so I'm coming to my "CC PEEPS!"
Two rounds of radiation down for Mike on 5 tattooed areas for hip and spine! He will
be going for 15 treatments. So far both days... he began two days ago and he looks awful, wiped out, coloring is off, and he has puked his guts out!! Wtf!! Is this all normal so fast??? Please give me information from your experiences. Btw, he still has his ostomy bag so I know about the bowel issues... lots of watery poops! Thanks for your help, information, ideas, and suggestions! Really, a total WTF! He looks worse than when he was on chemo... He just finished his 10th round and had to stop because of hip and spine pain with an MRI that showed hip and L-5 lesions! Btw, did I mention WTF!!! Lung and liver areas shrinking on scans while on erbitux, wakes up with severe pain one day and can hardly walk... They do an MRI and whamo!! Gotta stop chemo and start radiation overnight to deal with 2 new areas! Ugh!!!
Total pukesville for me!!!!
Last edited by Seriously, WTF? on Wed Oct 10, 2012 4:46 pm, edited 1 time in total.
ALWAYS IN MY HEART!
5/7/2013

KimT
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Re: WTF!! A little advice please

Postby KimT » Wed Oct 10, 2012 8:29 am

I don't have any personal experience but I have chatted with others while I was getting chemo about radiation. Everyone I talked to said that radiation was much worse than chemo. I'd be in touch with your doctor to see if there is anything they can do to help with the vomiting. So sorry he feels so crummy.
2/10 dx colon cancer
right hemicolectomy 3/19/10
Stage 2a 0/43 nodes
Lynch syndrome
3/14/10 colon resection/ removal of metal clips
Nov 11 dx ovarian cancer

Mona
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Re: WTF!! A little advice please

Postby Mona » Wed Oct 10, 2012 11:23 am

I am so sorry to read the last update of Mike road. I never had radiation, so I can not give you any advice.
Wow, it is really hard to take message good on one side and bad with other.
I will be thinking and praying for Mike.
Maria
At age 46 DX 7/21/10 Stage 4 colon cancer with mets to the liver.
8/10 Folfox 6 tx
11/10 Colon/liver resection 1/29 nodes
12/10 Folfox 6 tx, NED
3/11 chemo done
11/11 recurance liver
12/11 liver resection/Hai pump
01/12-07/12 Fudor/Folfiri

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Guinevere
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Re: WTF!! A little advice please

Postby Guinevere » Wed Oct 10, 2012 11:49 am

Talk to the radiology oncologist immediately. They can probably give y'all something for the diarrhea or at least advice on treating. For one thing, on radiation, he needs to stay hydrated - a lot. If it's not staying down, they'll probably have to put him on fluids and maybe even skip a treatment or two. Probably don't want that.
God bless ~
Guinevere
Hrt atk - Feb 11
CRC4 DX - Apr 11
APR liver rsct, procto - Jul 11
Folfox/Avastin - Sep 11
Xeliri - Nov 11
Iritux - Jun 12
Break - Jan - Mar 13
Iritux - Mar 13
Stivarga - Aug 13
Folfiri - Oct 13
Exhausted treatment options - May 14

MrPleistocene
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Re: WTF!! A little advice please

Postby MrPleistocene » Wed Oct 10, 2012 11:55 am

Nea-adj chemo-rad was pretty intense for me. I know some other RC'ers that cruised (comparatively) through. My tumor was a low rectal variety, so the side effects were related to that area, but as good as they are at targeting, there is going to be biological blowback. Primarily from the tissue around the targeted area and 'downstream' of the beams. The southern parts of my urinary tract were drasticly effected, even ones that weren't adjacent. Also, the radiation itself can steamroll you.

I don't have any magic tricks, but to say you may need to fight fire with fire and up the positive interventions with pills and rest. Maybe talk to your doctor about mixing and matching meds. A pre-zap ativan stacked with zofran or emmend and a good long nap right after treatment. At least with radiation, they usually call off the hounds after a point (either it works, it doesn't, or it is just too much). Hopefully that is the point where you have nuked your way into some new treatment options.

Good luck, I wish I could offer something more helpful. Radiation is insanity. I look back at my generic RC radiation in a haze. For friends ranging from breast, prostate, to brain, their periods of radiation were always trying.

Keep us updated where you can. I have faith that wiser minds than mine will have some productive advice.
DX 11/09 RC Stage IIIb
12/09 Chemorad w/Folfox
Surgery 4/10 LAR, Removed Seminal Vesicles
Clean Margins, T3N2M0, 4/19 Nodes
FOLFOX 6/10-11/10
6/10, 10/10, 1/11 Clean Scans, Normal CEA
12/10 Bi-Nephrostomy
12/10-2/11 HBOT
2/11 Reversal

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jgall
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Re: WTF!! A little advice please

Postby jgall » Wed Oct 10, 2012 2:17 pm

No advice, Chris hasn't done radiation, but I just wanted to say dammit Kathy - I'm so sorry to hear about this. I was wondering how you were doing, hadn't seen you around much...I hope you get it under control.

Julia
DH Chris, 50, Dx Nov '10 Stg 4
cardiac arrest from 5-FU
Iri/Erbi, RFA, liver/colon resection, more Iri/Erbi
Oct14-Feb15 clinical trial
SIRT Apr15-unsuccessful
Stopped treatment May15
Hospice July15
Passed 8/15/15
http://www.caringbridge.org/visit/chrisandjulia

wifenurse
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Re: WTF!! A little advice please

Postby wifenurse » Wed Oct 10, 2012 2:25 pm

My husband went through radiation prior to surgery for his rectal/sigmoid colon tumor. He never had side effects like those. He got tired over time, but was working full time up until the very last few days of treatment. His symptoms were related specifically to the area they radiated - so diarrhea issues. I suppose if they are getting the bowel with the hip and lumbar radiation it might be the cause of the diarrhea, but it shouldn't be causing the nausea and vomiting. I would check in with your physician.
Christy
Wife of Jayson, diagnosed Oct 2009 CRC - age 39
Radiation & Chemotherapy Nov-Dec 2009
Colon & Liver resection Feb 2010 - Stage IV
Folfox + Avastin X 12 treatments - finished Aug 2010
NED 10/10, 1/11, 7/11, & 12/11

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Kathryn in MN
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Re: WTF!! A little advice please

Postby Kathryn in MN » Wed Oct 10, 2012 2:55 pm

Radiation is tough. No walk in the park.

Number one - he needs an anti-emetic. I had uncontrollable vomiting last fall with radiation. If I took one Ativan and one Zofran 30-60 minutes prior to radiation I was nauseated, but no more vomiting. I was told that I wouldn't have the nausea and vomiting issues with my radiation this time due to location of the tumors. But I still had the trouble. But Zofran worked again.

Number two - proactive on the diarrhea. The anti-emetic will help a bit with that, but he probably needs to take Imodium the way it is prescribed during Irinotecan. And he may need to do my version - taking an Imodium 15 minutes before any meal, even when it seems the diarrhea is under control.

He may look pale and be VERY fatigued during radiation. It hits a few hours after the first treatment. If he gets weekends off, he'll start feeling more energy on Sunday, but after treatment on Monday will be really fatigued again, and by Friday it will be severe. Goes with the territory. The palliative radiation is different than the adjuvent or neoadjuvent radiation that some get for normal treatment.

The good news - radiation almost always makes a big difference in pain levels. After only a few treatments he should notice improvement. It made a world of difference for me with my shoulder and collar bone. I had to get help dressing and undressing and couldn't use my right arm much anymore. Now it isn't normal, but I can do most things for myself again. I hope he gets good pain management from the radiation.
CRC AUG09 Age 47
Sig Res T4a N2a Mx, KRAS mut codon13
Mets bones & nodes
FOLFOX, FOLFIRI, Avastin, Radiation
Irinotecan, Zaltrap & STAR RFA
APR13 pleurisy & ascites - more chemo & draining
http://www.caringbridge.org/visit/kathrynblume

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juliej
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Re: WTF!! A little advice please

Postby juliej » Wed Oct 10, 2012 3:31 pm

jgallagher wrote:No advice, Chris hasn't done radiation, but I just wanted to say dammit Kathy - I'm so sorry to hear about this. I was wondering how you were doing, hadn't seen you around much...I hope you get it under control.

Ditto. I haven't had radiation either, but I was wondering how Mike was doing too. You guys are always in my thoughts and my prayers!

xo,
Julie
Stage IV, liver/lung mets 8/4/2010
Xelox+Avastin 8/18/10 to 10/21/11
LAR, liver resec, HAI pump 11/11
Double lung surgery + ileo reversal 2/12
Adjuvant Xeloda 3-9/12
VATS rt. lung 12/21/12 - benign granuloma!
NED 3/17/12 to 6/13/2019, CEA<1

so-scared
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Re: WTF!! A little advice please

Postby so-scared » Wed Oct 10, 2012 3:56 pm

I am so sorry to hear that MiKe is going through this! I hope they/you are able to get things under control so he feels better and has less pain. DH had 5 weeks of radiation on his primary. He held up very well but towards the end the fatigue was really something! I do not have any suggestions for you. I just wanted to let you know that I have been thinking about you guys and I hope things improve very soon!! Hang in there!!
DH 51 yo
dx 5/16/11 stg 4 RC
mets both lobes liver & lung
6/11 chem/rad
FOLFOX 9-12/11
12/11 TME/liver resect/rfa (15 tumors)
more Folfox w/Avastin
5/12 innumerable mets liver
Folfox/Avas FAIL
9/12 FOLFIRI/Erb FAIL
HAI pump 12/12
Had to leave 5/23/14

crazymotherof8
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Re: WTF!! A little advice please

Postby crazymotherof8 » Wed Oct 10, 2012 8:18 pm

Kathy,
So bummed to hear that Mike is now in the "colon cancer does not usually move to the bones - HA HA!!" club!!! ARRRGGGG! Matt started having pain in his upper back and I jumped on that right away and insisted that the onc take a look even though he gave us the colon cancer doesn't usually spread to the bones speech. Being on this board I knew that it most definitely does move to the bones! He ordered a ct and then a bone scan, and sure enough he had a tumor in T5 AND his hip. He had one dose of SBRT to both areas and the pain went away very quickly. Can I ask why Mike's radiation treatment is spread out instead of just one big blast? I don't know much about radiation and it sounds like Mike and Matt have it in basically the same places; spine and hip.
This really is a WTF moment for the both of us!! I am so sorry!!! :x :x
Niki
DH Matt - 49 - father to 8
Dx Mar11 w/Mets to liver, lungs Folfox + Avastin Mar 11 - Jul 11
Sept11 Spleen remvd bc low platelets
Oct12 Folfox+Avastin
Mar12 Folfiri+Avastin
Aug12 bone mets; irinotecan+Erbitux
Dec12 chemo failed - trial
passed June 17, 2013

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Kathryn in MN
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Re: WTF!! A little advice please

Postby Kathryn in MN » Wed Oct 10, 2012 9:40 pm

Just one dose (even if SBRT) is not common. Usually SBRT is given for 5 treatments - spread out to 10 if the location is tricky and they need to lower dosage. Other radiation like IMRT can be anywhere from 5 to 40 treatments.

If they are only doing it for palliative reasons and not trying to kill the tumor off, if they don't want to have to take a chemo break, they may do just one high dose treatment and see if that works. I've been at the radiology clinic when someone has come in for emergency palliative radiation to a spinal met.

When I had radiation to 5 node mets last fall, I had daily IMRT for almost 8 weeks. I was set up for radiation to two separate areas, and both got the same number of treatments.

When I just had my radiation for my shoulder, clavicle, T1, T2, and T6 (couldn't treat my met at T5 at all - already in field of radiation before receiving lifetime max), I had to be set up for two separate treatments. Shoulder, collarbone, T1 and T2 needed only 5 treatments - higher doses. T6 was a very tricky situation due to 1/2 of it already getting lifetime max radiation - we had to use the Tomotherapy machine to be able to do it at all - and the dosage had to be backed off, so it took 10 treatments. There was too much concern about causing paralysis or permanent weakness - very tricky situation. That wasn't too successful I don't think, judging by my back pain. The radiation for my shoulder and collarbone, T1 and T2 made a big difference for me. We wanted to knock out as many bone mets as possible before I went back on chemo. You can't be on Irinotecan and do radiation. Deadly combo...
CRC AUG09 Age 47
Sig Res T4a N2a Mx, KRAS mut codon13
Mets bones & nodes
FOLFOX, FOLFIRI, Avastin, Radiation
Irinotecan, Zaltrap & STAR RFA
APR13 pleurisy & ascites - more chemo & draining
http://www.caringbridge.org/visit/kathrynblume

Lois7718
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Re: WTF!! A little advice please

Postby Lois7718 » Wed Oct 10, 2012 10:06 pm

The hip/spine radiation really did leave Bill fatigued and nauseous--ended up in the ER a couple of times for it. Bill never through any of his treatments had difficulty with the Big D. He was much more prone to constipation esp with the high levels of oxy he was on (80mg 3x day by then).

Not sure how high in the spine yours is getting radiation, but Bills was high enough that it quickly interferred with his ability to eat/swallow. I pureed everything...even oatmeal for 3-4 weeks.

As others have said hydration is important (Bill needed potassium so I looked for that in energy drinks such as Gatorade or vitamin water but quickly discovered it varied heavily by flavor...).

Nausea meds are also a good idea and make sure your taking them properly. Bill resisted them initially becaus he didn't think he could keep them down. We learned in the ER that the dissolve/melt in your mouth! The things they don't tell you will get you.

Not sure how much this helps. But know I feel for you. It is the cross of the caregiver that when can provide comfort but not really relief.
Wife of Bill5107
DX 7/10 Stage III

crazymotherof8
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Location: SE Arizona

Re: WTF!! A little advice please

Postby crazymotherof8 » Wed Oct 10, 2012 11:34 pm

So I did some research via "google" and found that one high dose of SBRT is routinely done at many centers. See this study: http://www.spinerf.org/sites/default/fi ... herapy.pdf. This is one of many. I googled SBRT and spine. The treatment doses typically range from one to 5. Matt's tumors were both very small and had not caused any damage to either site. Our radiologist came from MSK and in fact you will find some of his research when looking up SBRT. His name is Dr. Chong.
From what I read different centers use different methods, some choosing to use a very high dose in a single treatment while others choose to lower the dose and spread the treatments out to 5 treatments. It does make sense that one dose would be preferable to 5 if the patient needs to get back on chemo ASAP as was the case with my DH. But I am certain that the radiologist thought that the single dose would kill both tumors.
Niki
DH Matt - 49 - father to 8
Dx Mar11 w/Mets to liver, lungs Folfox + Avastin Mar 11 - Jul 11
Sept11 Spleen remvd bc low platelets
Oct12 Folfox+Avastin
Mar12 Folfiri+Avastin
Aug12 bone mets; irinotecan+Erbitux
Dec12 chemo failed - trial
passed June 17, 2013


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