Mother just diagnosed Stage 3 rectal cancer

Bethers1010

My Mom was jsut diagnosed with stage 3 rectal cancer.  I am so new to this, we are getting ready to start treatments of 6 weeks of Chemo and radiaiton, then surgery to remove the tumor.  I am really don't know what to expect with treatment and what questions to ask about dosage and drug type. We have an MRI scheduled with the surgeon to better stage the cancer this week.  Really new to all of this and looking for as much help as possible.

thank you all.

Trubrit

Sorry to hear

Its hard to watch those we love, stuggle.  I am glad you found this special forum of friends.

Your mum should be given a detailed hand out, explaining what her treatment cocktail consists of. You will become familiar with them, as you read posts here on the forum. 

As far as side effects; it really depends on the individual. Some breeze through treatment, able to work, suffering side effects for sure, but they are not dibilitating. Others, well, they can suffer terribly. I myself was hit hard with the chemo and even harder with the Radiation.  You just won't know what your mum will expereince until she is there. 

Depending on the chemo, there are some things to look out for, and stop before they start, kind of thing. If she is going on Oxaliplatin (FOLFOX or FOLFORIL) then I suggest she keep gloves by her side at all time, but especially when handling anything cold (fridge) or going out in the cold. 

Also keep hands and feet moisterized, as there is a side effect called hand and foot syndrome. They will crack, burn and peel. This can be pretty much avoided with the cosistent use of creams and unctions. 

I kept a VERY detailed notebook. Listed everything that I experienced, regardless of wether I thought it was chemo related or not. I went through that list one by one with my Oncologist at EVERY appointment before the chemo infusion.  The first time, my Onc popped his head around the door and said 'everything OK, Mrs. ... ' and he was about to trot right off. I called him back and had him sit down, and went through my list. 

Also in this notebook, I listed any questions or concerns I had and would write down his response (or have my husband do it), as I was likely to forget as soon as treatment was over. 

Its a journey and a half.  These are just a few things, there are so many more. 

Just take it one day and one thing at a time with your mum. I hope she has someone with her at EVERY appointment, it really is quite helpful. 

We're here to answer any and all of your questions. Listen to your joys and heartbreaks. The forum runs slowly sometimes, so be patient. 

I wish your mum luck as she moves forward. 

TRU

Bethers1010

Thank you TRU

I have been keeping a notebook so far of everything as we are very early in the treatment process.  I really appreciate all the information you have given and I am sure I will have more questions.   We plan on taking everything one day at a time and trying to stay as posvitive as possible. 

mozart13

My experience

diagnosed with T1-T2 stage, one lymph node affected, curentlly in chemo/radiation treatment, 25 sessions.

After inital staging got 3 tatooes as markers for radiation.

On xeloda pills twice a day on the day of therapy, don't have many side effects except burning feet at night,

there was some cracking of the skin on heels, they gave me proshield plus cream, that took care of cracking,

burning is still there mostlly at night and at the end of week.

That is apparently sign that chemo is working.

Radiation, first week my bm was thin like pencill, it is normall for bowell to swell initally

my surgeon told me to drink a lots of water, and that took care of that.

Some people get diarrhea, some dont, depends on anatomy.

I avoided foods rich in fiber, vit a,c,e and d.

Protein is very important.

I walk every day 3 to 5 km.

Small piece of chocholate here and there, to prevent diarrhea, works for me.

Baking soda to prevent mouth sores, works well for me.

I take pills at the end of meal, so no issuess with stomach.

One more week for me, than ct, mri and colonoscopy, to be folowed by low anterior resection 

with temp. bag, than another round of chemo, and reversal of first surgery to remove bag

and connect all the plumbing, will take me abou year to get through.

Wish your mom all the best in her journey!

JanJan63

I had something similar.

I had something similar. Radiation and chemo before surgery to try to reduce the size of the tumour. It was difficult. The fatigue was much worse than I expected. But once it was gone I felt much better and then had the surgery. Mine was staged at 3 but I wasn't told that until after the surgery and was based on them finding it in three lymph nodes involved. The chemo did not make me lose my hair or become nauseous. The radiation wasn't bad at all. I took warm baths in epsom salts and made sure I didn't use my seat heaters in my car so I could sit on the cold seat after each treatment. I swear that's why I didn't burn. the surgery was 2 1/2 years ago and I'm now up to having checks (scopes becuase I have an illeostomy) every 6 months and have had no recurrence. I'll find out on Jan 30 if the spots they've found in one lung have grown. They found them last year but don't know if they're mets or not because I'd had a blood clot in that lung the year before and it could be scarring from that. So far they're very slow growing, whatever they are. I can't have a biopsy because I'm on blood thinners due to the blood clot. So it's possible I've beaten my cancer but even if the spots are mets I expect to be around for a good long time.

I hope this helps.

Jan

Bethers1010

Thank you all

We are starting chemo next week and are schudeled for an MRI next week as well to stage it better and then start radiation.  I am glad to have this process geting started as she is eager to get better and fight this.  Did anyone have any bouts of diarrhea with treatment? she is already having diarrhea due to how low the mass is in the rectum and how much it is clsoing off the rectum.  I am trying to prepare the bag she will be carrying with her and have no idea what to include in it.

Trubrit

Bethers1010 said:

Thank you all

We are starting chemo next week and are schudeled for an MRI next week as well to stage it better and then start radiation.  I am glad to have this process geting started as she is eager to get better and fight this.  Did anyone have any bouts of diarrhea with treatment? she is already having diarrhea due to how low the mass is in the rectum and how much it is clsoing off the rectum.  I am trying to prepare the bag she will be carrying with her and have no idea what to include in it.

Diarrohea? It DEPEND's

That's a joke in the subject line.  

Treatment, radiation or chemo, has different side effects for different people, so I can't say what your mum will or won't go through, but lets just say that diarrohea is one of the more common side effects, as is.......constipation. Yeah, from one extreme to the other. 

That brings me to my 'joke'.  It wouldn't hurt to get a pack of Depend or some other brand adult underwear.  I have a saying 'Depends are my friends'.  I could not have survived radiation without Depend underwear. 

You may also want to have ready some good quality creams or oils, as radiatoin burns the skin around the anus and the surrounding area. My favourites were Burt's Bees Vitamin E & Lemon Oil, Aubrey Organic's Pure Aloe Vera.  There is also an adult diaper cream called Balmex, if things get really bad.  - Not to be used on before going in for radiation. The skin has to be clean and free of any oils, creams or powders. -

I also recommend a Sitz Bath. 

I don't want to scare you, but it is also good for you mum to be prepared for some serious pain. It may not happen. There are many here, how have just breezed through radiation, but for me, well, I won't go into it unless you want me to.  I just know that I was grateful for the member (passed on now) who warned me about the pain. Not that it really prepared me, but at least I wasn't totally freaked that something was terribly wrong. 

Bethers1010

Depends are now HER frineds

Thanks Turbrit, i would like to know about the pain you experienced, just so I am prepared to help her however I can.  We saw the oncologist today and received our receipe.  she will get Capecitabine + radiation therapy 5 days a week for 6 weeks.  the dosage on the pill is going to start out at 3 pills 2x a day.  Has anyone ever had experience with the pill vs. the pump.  I know she is worried about side effects and also having to take so many pills a day(she is not a pill person).  From looking at the handout on the drug, it looks like the side effects are pretty much the same as with the 5FU pump. Any information would really help keep me up to date.

thank you

 

mozart13

Capecatibine or Xeloda

It is the same drug, effect is the same when it comes to cancer cell, pill converts to 5 FU in the body.

Quality of the life is much better with pill, to receive iv drug, one needs pic line, there was one patient in my group that had pic line, it requires more time in hospital , where pill is taken at own convience, there is less side effects with pill as per Mayo clinic.

I dont have much side effects, my oncologist was voriying about hand foot disease when I mentioned to her burning feet, but didnt happan, last couple of days my leg muscless started to hurt after my daily walk, so today I took magnesium and calcium pill, and the pain is gonne, I feel less tired.

I have feeling that every thing is shrinking behind my tail bone, no pain.

LauraCF

My partner has had both pills

My partner has had both pills and intravenous (5FU) via PIC line.  The intravenous was actually easier on his body because it didn't have to go through the digestive system.  Also, when on the intravenous he had a small "baby bottle" connected through the PIC line that came home with us for three days each cycle.  It wasn't much of a hassle.

Another big concern while on chemo is extreme reactions to cold, as in avoiding opening the fridge and never picking up cold items.  

Long-term consequences include foot or hand neuropathy.  Sometimes this never goes away; for others it fades over time.  There was no horrible vomiting or anything like that. 

No hair loss, no real illness, perhaps overall weakness would be an accurate description of how he seemed to me. 

Trubrit

Bethers1010 said:

Depends are now HER frineds

Thanks Turbrit, i would like to know about the pain you experienced, just so I am prepared to help her however I can.  We saw the oncologist today and received our receipe.  she will get Capecitabine + radiation therapy 5 days a week for 6 weeks.  the dosage on the pill is going to start out at 3 pills 2x a day.  Has anyone ever had experience with the pill vs. the pump.  I know she is worried about side effects and also having to take so many pills a day(she is not a pill person).  From looking at the handout on the drug, it looks like the side effects are pretty much the same as with the 5FU pump. Any information would really help keep me up to date.

thank you

 

Again, I want to emphasise that not all patients experience the same side effects. I do know others that expreinced the same as I did, but I think for the most part, the majority of patients, well the ones who post here, had a much easier time during radiation. 

The pain.  I remember reading a post where our friend (now passed on) said how he kept a clean wash cloth by the toilet to bite down on when he went to the bathroom. I remember thinking 'Really?'. And I found out, REALLY!  The pain was equal to contractions while giving birth, except it happened over and over again - as in ten or more times a day - day in and day out, week in and week out.  I was totally exhausted from pain. I literally, and I mean LITERALLY, would crawl from the bathroom to the chair.  

I have suffered much pain in my life, including a C-Section without anesthetic (yeah, you read that right), and the pain during radiation surpassed that horror. 

The awful thing was, I would have these contractions, that worked their way down the colon, and then at the end, a tiny bit of viscous material would plop into the toilet bowl, when it felt like I was surely passing a bowling ball. 

I did lose my hair during radiation. I looked like Gollum, and ended up shaving my head. I think the hair loss was a result of the 5FU as opposed to the radiation, or proably a combination of both. 

I also suffered terribly neuropathy in my hands and feet. In the end, my 5FU was stopped because of the severity of the neuropathy (See pictures of my hands). Don't let your mum's hands get that bad.

I apologise for the large picture. I tried to make it smaller, but it is not working. 

 

Bethers1010

Thank you All for the Information

Trubrit, thank you for detailing your journey and what you expirienced, it will truley halp my mom if she does get the pain.  Mozart and Laura, thank you for the information on the drug. I am so new to this and trying to do my research on respected websites versus just googling.  She is going to start with the pill and hopefully handles that well, as she wants to try and keep working for as long as possible.  I will keep everyone updated once we start chemo.

thank you again.

traci43

PICC vs. port

If your mom is going to be doing 5-FU pump and not Xeloda pills, try to get a medical port installed.  It's much easier to deal with than a PICC line which has an IV stub external to the body and has to be covered when showering and flushed weekly.  A medical port is completely under the skin so no covering for a shower, and is flushed monthly or during treatment).  The use a bent IV needle to access the port and tape it down with tegaderm which is a waterproof covering.  The port also helps to preserve the veins because it empties into the vena cava, a really large vein, rather than a small one in your arm.  Traci