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hoping you all can help me

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2853
Joined: Mar 2013

I survived uterine cancer, but I just found a dear friend of mine who stood by me through it all was dx with rectal cancer. 

She told me they found a tumor but will treat with chemo and/or radiation before she has surgery.  (she had a surgeon consult but chemo/radiation docs are in the upcoming weeks)  I know uterine cancer, but not GI which is why I need your help.

- can anyone share with me if they had anything similar?

- what is the common chemo used? (IV? pill?)

- what is the common radiation? (IMRT? any brachy type?)

- what side effects should she be aware of? 

- what tips do you have to share? 

Thank you all in advance.  

 

NOTE:  I know there is an Anal cancer forum, but it is very quiet.  I realize rectal is different from colon, but hoped some of the treatment was similar.

Erica2016's picture
Erica2016
Posts: 24
Joined: Oct 2016

Hi No time for cancer, I have rectal cancer and received surgery before any chemotherapy.  Pathology results staged at 2A and I was treated with 6 rounds of Oxaliplatin and Xeloda in pill form. After my treatment was over I received 30 days of radiation with breaks on the weekend, because I am female we decided my ovaries would be moved away from the path of radiation. The Oxaliplatin and Xeloda caused fatigue and sensitivity to cold. I also didn't loose my hair with Oxali and Xeloda.  Looking back that combination of chemo was easier compared to the cocktail I am on now. The surgery to remove my rectal tumor was by far the hardest , I remained in the hospital for three weeks for observation. No colostomy bag was needed in my case. Tips: Plenty of warm fluids, I would tape up the door handles and purchased a handheld tempature laser thermometer ($20 on amazon)(cold sensitivity to everything). 

 

That was my initial diagnoses, unfortunately mine returned in the liver and now my lungs. I have found through this forum that standard treatment for colon and rectal are quite similar. I hope this forum is as helpful to you as it has been to me.

 

I wish your friend the best.

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2853
Joined: Mar 2013

Erica, thank you for sharing your story with me.  Your information and tips are helpful.  I believe the surgery will, by far, be hardest for my friend, and I will start my list of notes.

I am sorry to hear that yours is now in my liver and lungs.  I hate cancer and what it does to people.  There is so much more that needs to be done.  My prayers for you dear warrior.

SnapDragon2's picture
SnapDragon2
Posts: 445
Joined: Nov 2019

What stage is she and CEA at a minimum for things to know?  If II or III, maybe look into Total Neoadjuvant Therapy (TNT).  It works in about 30% of people.  I would also consult a naturopath to help during treatment for a strong immune system.  Lexington Natural Health is excellent and Dr. Belanger is a cancer survivor.

Make sure the surgeon is a board certified colorectal surgeon.  It makes all the difference in outcomes.

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2853
Joined: Mar 2013

She tells me it is a 2.4 cm mass that they hope to shrink before surgery.  Thank you on the surgery tip - that is what I want to know.  In gyn cancer - you need a specialists there too!  Gynecologic oncologist to perform the surgery.

Also, CEA is what I need her to ask - TY.  She knows my marker is CA125 - but I will tell her to ask about this.

SnapDragon2's picture
SnapDragon2
Posts: 445
Joined: Nov 2019

Before any treatment she needs a CEA, CA19-9, hsCRP. ESR as her base levels.  Those panels might become very important later as a measurement tool for after surgery and adjuvant treatment progress.

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2853
Joined: Mar 2013

Thank you, SnapDragon.  We saw the CEA but not the others, so thank you.  

worriedson714
Posts: 189
Joined: Dec 2019

He had Oxaliplatin and 5fu chemo and got neuropathy pretty fast which cause them to cut the oxaliplatin one dose short of finishing . To me that seems like the biggest side effect from rectal cancer treatment neuropathy my dad needs a cane to walk now so I would watch out for that . 

 Also where is her tumor ? my dad's was way low and he ended up with colostomy for good so if her's is up higher the better to . And one thing my dad and me regret is during chemo they did scans and never told us if it was shrinking . I wish we would have insisted to know cause it turns on the chemo didn't work it didn't shirk so it was all for nothing so I would have her keep up on that to good luck . 

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2853
Joined: Mar 2013

The tumor is in the rectal wall, and she said they want to shrink it prior to surgery, and she has already to mentally prepare for a colostomy.  She has already selected a name!  I will tell her she must ask about the shrinkage.  

Dang nueropathy.  I was lucky not to get it, but I it does affect so many.  

Thank you worriedson, I appreciate your reply. 

Trubrit's picture
Trubrit
Posts: 5378
Joined: Jan 2013

Anal is differnent, again, but as you know, all pretty close. 

You are a good friend to come looking for help. 

I do want to put a good word in for General Surgeons.  My bowel resection was performed by a general surgeon EIGHT years ago next month. I am stage IV Colorectal, so I think I can say that he did a damn good job.  So, if a specialist is not available in your friends area, it does NOT mean that she will get an under par surgery. 

Side effects are numerous. Some get them all some none (thuogh I bet those lucky ones are few). I seemed to run the whole gammut of side effects. I have an extensive list, here Tru's Chemo Side Effects if you are interested. 

Radiation was another long haul, for me, worse than chemo. 

Tips: Keep a detailed notebook of EVERYTHING expereienced. Right down the the little 'I doubt this is a side effect', and go through that list with the Oncologist before every Chemo infusion. Writing down or taping - with the Oncologist permission - their reponses. 

Keep hydrated. Mouthwash of warm water, baking soda & salt. Try to get a little exercise, or allot, depending on your energy level, but know your limits. Push them a little, but not allot.  

Sensitivity to cold, regardless of the weather, is usually experienced by everyone. Drinking anything cold can produce an electric shock type sensation in the mouth. Touching anything cold, cutlery, door handles, anything in the fridge & freezer - yogurt is the worst thing to drop. It goes everywhere and is a pill to clean up. 

Make sure they keeps an eye out for neuropathy. Once it starts, they needs to tell her Oncologist. I didn't, because I didn't know what was going on until my hands and feet were purple, numb and felt ten times larger. That was seven years ago, and I have neuropathy to this very day.  The earlier it is detected, the better. 

To be honest, I could go on and on - have done in many a post. Being a Cancer survivor yourself, I bet you already know allot. 

 

 

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2853
Joined: Mar 2013

thank you, Tru!  I am sure 'the list' scares people, but that is what I want to know.  I can find my own way to break it to her...she trusts me.  

TOTALLY agree on the notebook.  My best friend had started mine for me and I still use it to this day on my dr visits.  My friend facing this sat with me during chemo, so she wrote down when they started, that we had to slow down the taxol, etc....I told I wish I had written more. 

Has anyone ever iced their hands and or feet to try and minimize the neuropathy?  Some of the women seems to think it helped them...

Thank you all!  I appreciate the honesty and recognize all you have gone through is helping others.

Trubrit's picture
Trubrit
Posts: 5378
Joined: Jan 2013

One of our past members used to ice her hands and she said it worked for her.  Sadly, she is no longer with us, but her knowledge lives on.

I was able to find her post. Here it is https://csn.cancer.org/node/293092

 

Tru

Trubrit's picture
Trubrit
Posts: 5378
Joined: Jan 2013

I had a few people message me after I posted my list of side effects way back in 2015. They were very upset with me, and told me that I should not have posted them, becasue of scaring people. 

Tough, is what I wanted to tell them.   While in hindsight I should have started the thread by saying that we are all different, and not everyone will experience such a vast list of side effects, I still to this day - which is why I linked my post - think that when you are forewarned about what COULD happen, you are more prepared.  

Tru 

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2853
Joined: Mar 2013

Thank you all my lifeline!  She tells me Stage II and she is good with me giving her info.  I do like frozen bottles of water to hold, but the feet are something else.  

Tru, or anyone, if you have your thread on radiation tx bring it on!  Was it just pelvic?  and how much?  I know what I had, but this is a different animal.  

 

 

Trubrit's picture
Trubrit
Posts: 5378
Joined: Jan 2013

It still makes me shake.

While chemo was not a fun ride - as you can see from my list, raditation topped it and then some. 

Yeah, I think at the end of the day, I probably run the gamut of side effects from both chemo and raditaiton. Maybe survival is my reward, as I am still here to talk about it, eight years from diagnosis (next week) and Stage IV. 

I never did a thread about the side effects of Radiation. Back then, maybe I was still sensitive to all the negative feedback I got in my CSN personal mail box.  Now, I don't give a..... well, I don't care so much what people think. 

Radiation was pure Hell! I can't think of anything worse, and I have been through allot - including a C-Section without anesthetic. Actually, the pain was probably allot like the C-setion, but that only lasted an hour, and I got a beautiful baby boy at the end of it. The pain from radiation lasted a good two months, day in and day out, with a few hours of OK in-between. 

The pain was like giving birth. Contractions and then push, push, push. At the end of the push, maybe a TINY TINY bit of mucus. Get up off the loo, and then the pain would hit again, and back on the loo you go. Contractions, push, push, push and then whatever. 

Diarrhoea was off the charts. Everywhere. Thankful for the washing machine. And who on earth decided to spell Diarrhorea/Diarrhea? - the American version almost as bad as the English - 

Cold. Bone cold. It was in the 100's when I was on radiation. Under two quilts and an electric blanket. 

My hair did fall out. Gollum style, so I just shaved it off. But that was the chemo, not radiation. 

Skin turned black between the legs. 

Oh, and vaginal and rectal stenosis. Out the window went the sex life. 

I think thats enough for now, eh.

I am sorry about your friend. But do remember, everyones journey is different. While some things may happen, some may not. maybe none will and she will be one of the lucky ones. 

I wish her the best. And may your friendship continue for many, many years, complete with sitting in your rocking chairs remembering the good and the bad 

Tru

 

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2853
Joined: Mar 2013

Thank you, Tru.  I appreciate your honesty with me, as I asked the direct question.  I do realize 'everyone is different', but this also lets me know how to help her from the COVID distance.  

I can't imagine how people didn't go absolutely crazy not finding others with their cancer prior to this wonderful thing called the worldwide web.  I learned early on when reading these pages there are times I needed to stop and others that I needed to be fully in.  

A sincere thank you.

 

SnapDragon2's picture
SnapDragon2
Posts: 445
Joined: Nov 2019

I drank 2 bottled waters to have a super full bladder to protect my organs from rad damage.  And yes, by the time appt is over I had to get to the bathroom to pee.  Whew!

She will need some gentle wet wipes, toilet paper is like corncobs.  I used witchhazel wipes.

A sitz bath with baking soda alternating the next time with epsom salt will neutralize any bacteria from stool so you won't be as raw.

 

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