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Help. Rectal cancer. Now radiation and chemo 5 days a week

teddi13
Posts: 1
Joined: Jun 2019

My partner was just diagnosed with rectal cancer. The tumor is close to the anus so they recommended 5 day a week radiation for 6 weeks and portable chemo that he will "plug" into a port using a take home machine and wear it 24 hours a day M-F and then have it undone and start over the next week for 6 weeks. Has anyone had this portable chempo. How does it work? Can you take a bath or shower? Can you exercise? 

Trubrit's picture
Trubrit
Posts: 4906
Joined: Jan 2013

I'm sorry you have found yourself here, and for your partner's diagnosis. 

I had the radiation and 5FU chemo 24/7.

I was really worried about having the chemo hooked up to me for six weeks, after having it hooked up for two days every other week, and hating it. BUT, I found it easier having it 24/7, because you just get used to it. 

Your partner can shower, because the port is covered with a waterproof seal. The tube is extra long - well, my set up was; not sure what your partner will have.  

I am thinking there will be certain forms of exercise that he will not be able to do, becasue belive me, he does NOT want to dislodge the needle. He will be given a whole HAZMAT kit, just in case, but the chemo is nasty stuff, and you do not want to get it on your skin, or anywhere, for that matter.  Be sure and have him talk to his Oncologist about exercise, and see what he is able to do.  I know walking is OK, because that is what I did when I could.

Now it is summer time, be sure he doesn't go out in the sun uncovered. Hat, shirt with long sleeves, long trousers.

I had a pitiful time during radiation, but most people tolerate it.  

Be prepared with some DEPEND underwear, they saved the day for me, I can tell you.   I would also get some PURE Aloe Vera - it is different than the gel, and needs to be kept in the fridge. It will really help with 'The Burn' around the anus and inner thight.

I would also invest in a SITZ bath. The whole area can get painfully sore, and some warm water in a SITZ is so soothing.  

Take one day at a time, and know that the six weeks will pass - albeit slowly at times. 

Again, welcome. Be sure to ask any questions you want. We will be here for you, and for your honey. 

Tru

 

Lan53
Posts: 13
Joined: Apr 2019

teddi13,

I am so sorry you are here but I read this site for weeks and have received a lot of info by reading.

I was diagnosed on March 28th, had tests for five weeks and started the 5FU 24/7 on May 17th and radiation on May 20th five days per week. I am three weeks in this week with two weeks to go. It is inconvenient but very doable. I was told that the waterproof seal isn't totally waterproof and my first purchase was a handheld shower. I highly suggest one for convenience as I was advised to cover the port area with Glad Press & Seal. I am up at 5 every morning, off to radiation (30 minutes away) and then to work. They keep telling me week 3 - this week may change things so I shall see.

I have been very fortunate to work daily and the only side effect has been a nap when I get home. This is by choice as I have five months plus of sick time and vacation, I do love my work. Treatment affects everyone different and I am positive that a good attitude and a strong mind are very helpful. I still have a long road, my oncologist said the treatment plan is to cure me. I am praying and planning for that to happen.

This journey isn't what anyone wants to be doing but make the best of it as there will be a few laughs along the way. The first week my machine feel out of the bed and then on a rainy day at work the bag slipped off my shoulder and I closed the car door on my line. It is pretty tough, no issues so I am making it fine. I totally agree witrh Tru as I have read her posts for over two months, she is a real trooper.

I wish you both the best as you start the journey to be cancer free. I have a great support team between family and friends, that plays a major role in the journey as I have found these past two months.

I will be happy to answer any questions you may have as I had two pages for my oncologist the two weeks prior to starting chemo. Please remember this is very treatable, stay positive and strong.

Prayers,

Lana

 

 

 

annie4145
Posts: 118
Joined: Jul 2018

I had anal cancer so slightly different protocol.  Chemo 24 hours per day only on week one and week 5, and I had a PICC line rather than a port.  But here are my thoughts.  Just have your partner stay ahead and take the anti-nausea medicine before feeling really sick.  The first night on chemo, I was feeling bad and decided just to go to sleep and "sleep it off" like you normally would with a mild upset stomach.  Not a good idea.  So take the medicine on time; it kept things in line for me really well thereafter.   I didn't really feel like exercising.  With my PICC line, I am not even sure that I took a shower the second week.  The first week, I think that I wrapped it up really well before a bath (not a shower).  The six weeks seems long when you first start, but it really does go by pretty fast. 

 

 

AnneO1965's picture
AnneO1965
Posts: 71
Joined: May 2019

You might also want to get some of the flushable wipes...  I know about 2 weeks into my radiation, they saved my butt... Literally...  It became very painful to use regular toilet paper, so I bought some of the wipes. Made a HUGE difference.

 

LSU2001
Posts: 24
Joined: Dec 2017

My first treatment was 6 weeks of radiation with the 5FU pump hooked up 24/7 for 5 days per week.  As mentioned above about 2 weeks into the treatment my anal area became very inflammed, raw, and extremely tender.  I used warm/hot baths to help and keep the area clean.  I purchased a  cold water Bidet, used wipes instead of TP and most importantly my doc prescribed a lidocaine cream and a hydrocortisone cream to keep on my anal area.  

The lidocaine cream numbs the area and the hydrocortisone helps combat the inflamation and tenderness.  THere were times that the pain was very, very intense and these creams helped me make it through.

Tim

suchislife
Posts: 3
Joined: Jun 2019

Hi Teddi,  I had the same thing your partner had with the same radiation schedule.  One thing I'd like to warn you about.  Apparently on about the 3rd week of radiation, the tumor will swell before it starts to shrink.  That happend with me and it completely closed me off.  Sealed shut.  I came very close to having an emergency colostomy.  Something you do NOT want to have.  So if the tumor is large and you can't tolerate much swelling, be aware of that happining on the 3rd week.  Steroids will take down the swelling if it happens.  My radiation oncologist didn't tell me that..until I as sealed shut!  He should have...I could have taken the steroids as a preventative measure for a few days and spared myself a LOT of pain.  Just something to keep in mind.

Linda

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