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A community of cancer survivors supporting each other.

U guys are so awesome!

Thank u all for responding and your outpour of support.  I would like to know more about your side effects during treatment. As for chemo, has anyone taken Mitomycin IV and 5FU pill form and can share effects from those ?

Danean, DeAnna threw a punch at your cancer.
Danean, DeAnna sent you a prayer.
Danean, Porter sent you a hug.
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I had a port in my chest and that was how I received my chemo. Two weeks after beginning treatment, I ended up in the hospital with an abdominal infection-my white blood cell count had dropped extremely low at that point. When I did the second round of chemo, they gave me Neulasta to boost my white blood cell count so that didn’t happen again. I had many side effects during and after treatment and I won’t say it was easy, but now I am nearly 3 years out and I feel great. After being friends on this blog with those who are at stage 4 or who have lost their battle with this terrible disease, I feel extremely lucky and I’m thankful every day that I went through the treatment. This is not a disease to be trifled with - it’s not worth the cost. Like you, I had no risk factors and had always been very healthy person. Cancer does not discriminate and I’m just very thankful mine was caught early enough to be considered cured at this point. If and when you do decide to go through treatment, this is an amazing support system who will help you through every step of the way and will provide you with many tips for dealing with the side effects. I didn’t find this blog until a month after finishing treatment, and that was hard for me-when I was going through treatment I felt a lot of embarrassment and I had never known anyone else to be diagnosed with anal cancer other than Farrah Fawcett. This blog site has been a godsend of support - thank you Jill!
Easterly, Laura like this comment
I had Mitomycin IV but 5FU pump for 5 days twice during treatment. It's not the chemo for me but the radiation that did me in. On top of that I had salmonella poisoning that put me in the hospital for almost 30 days. Nightmare. I think I would have done better without that on the side. No nausea but did have mouth sores. Get the mouthwash ahead of time, it helps. Lost taste from the chemo for one year. Could not drink either. Had to have TPN to sustain me for some time. Was able to start to eat at the end of the treatment but most food was not good for a long, long time. Fluid was even harder. The first drink I was able to get down was grapefruit juice. Tried EVERYTHING. I think most people did not get the loss of taste issues I did so I might be the exception. The fatigue was tremendous, spent most of my weeks in bed. Just to move from one place to another required holding onto walls. I did force myself slowly, to start exercising again after treatment. I am back to where I was prior to treatment (I walked and did weights every day for decades) but I cannot do the weights I used to. Had 3 blood transfusions, cell counts dropped. Suffered from anemia in year 2 but solved that problem. I am lucky, I was a stage 3B, every time I go to my radiologist she is surprised I am still here, I will reach 4 years at the end of July 2018. That is why we all want you to go get treated ASAP. You are lucky you are relatively early in stage. Go knock out the cancer and join the warriors! We are all here to support you. Oh, and put in a port prior to treatment, you won't regret it.
3 people like this comment
Hi—Just got news from Easterly that you need help and info? I hadn’t seen your post before. During my treatment (2014) I had mouth sores and very low WBC during first two weeks (chemo), then radiation mostly caused some burning of the genital area and severe itching, but I didn’t have the severe burns that some report. I had a C. Diff. infection in 6th week, which delayed last chemo (in week 8). My onc halved my last chemo dose due to the side effects of the first time. I’m 4 years post treatment with NED so far. I’m with Easterly in that I wouldn’t postpone treatment. The one we’ve all been prescribed is the best and most proven for our disease, and in most cases it works. Post-treatment recovery varies from person to person. Best advice: Go to a highly regarded medical center for treatment, be your own best advocate, ask lots of questions, and keep your team working for you. You can beat this, but holistic methods have been shown over and over not to work. It’s too serious of a problem to not be treated medically right now. Please keep us posted because we care!
Easterly, DeAnna like this comment
Hi,

I had a pict line, less invasive than a port and it’s removed shortly after treatment, which I liked. The chemo was given Over a 4 day period around the clock. I carried the device with me in a fanny pack, so could be at home.. I used an alkaline based mouthwash called Glycothymoline and it prevented mouth sores. The thing is there’s a lot to be said for your intentions and determination to heal. I freaked out over possible side effects but once I decided to go forward I prayed for the highest good and blessed each chemo treatment. I have my women’s group pray for me each day during radiation treatments, and I expected to be healed. I also had a dream on the 2nd round of chemo that prompted me to request a reduction in the 2nd chemo, and they did by 20%. Whatever you do, this group is here to support you.
Easterly likes this comment
the first day of treatment I had Mitomycin (about a 20 minute infusion)capecetabine(Xeloda) which is 5FU in pill form , which is taken 5 days a week concurrent with radiation.. . For some reason, I didn't have the Mitomycin the last week.

I did Not have mouth sores, nausea or vomiting, although I had no appetite. My hair thinned a bit and then there was some shedding about a month or so after the end of treatment. No energy and very tired. At the end I did have hand and foot disease BUT NOT everyone gets this. My white count stayed within range, so treatment was never postponed. By the end of treatment, I was a bit weak and very tired.

I had proton radiation.I had bladder and bowel frequency and urgency( and the area being radiated was very sore and painful; and going to the bathroom was pure hell. I didn't have blisters, but the skin on my thighs is still very dry. I don't have hip and back pain.

I will be 3 years out this month. My main problems are minor bladder issues and constipation (but I have a history of constipation) I did have some pelvic floor physical therapy which was helpful.

If you decide to be treated, be sure and ask your radiation oncology nurse
about getting dilators to prevent vaginal stenosis.

I mostly managed the pain(actually extreme soreness in the private parts) with advil and near the end oxycodone; also Aquaphorcream with lidocaine and sitz baths .


3 people like this comment
I had the same treatment as Cleo as that's the protocol here in the Netherlands. The side effects that most bothered me came from radiation burns which hit hard in the last 2 weeks of treatment and lasted about 10 days after. I had good pain medication and stopped that after treatment.
I was very nauseous at the start of the chemo but once the correct (for me) anti sickness pills were found I was fine. I ate because I knew I needed to, not because I wanted too. I had 2 blood transfusions due to a very low red blood cell count (hemoglobin).
The treatment is not easy, but you can get through it, truly. The BFAC is a wonderful group to share with and get support. I have never met anyone in person who has had this disease, so I really needed this group to help me through. It's been a godsend.
It’s a standard protocol and while it’s not easy it is manageable. Read Helens website. I’m 6 years out and doing great. What city are you near? One of us may be close. One of my former docs scared me with what the treatment was I almost didn’t do it but I found a cancer care team that was incredibly supportive and did it. This website allowed me to know what to expect and It was manageable with support. Hugs
Check out my archives from 2012 on what I put together prior to treatment. Largely taken from Helens website on what to expect.
I was diagnosed with Stage 2 rectal cancer August 31, 2009, at the ripe old age of 41. I had surgery to remove the tumor October 5, 2009. I then had pelvic radiation five days a week for five and a half weeks, the same as my friends here with anal cancer. I had Xeloda (5FU in pill form), but I didn't have Mitomycin. My side-effects from chemo were minimal, I believe. (It's hard to extrapolate which treatment caused what.) I didn't lose my hair, didn't have mouth sores, didn't develop neuropathy, etc. My platelet counts took a dive and I had to have breaks in treatment because of it. (I was then diagnosed with a preexisting platelet disease - chronic ITP - so I think the low platelets were specific to my case.) I developed some black streaks under my fingernails from chemo, but they went away in a few months.

The radiation was rough but short. I still have side-effects, but they're tolerable. I believe radiation has allowed me to still be here almost nine years out.

My dad tried to cure his prostate cancer naturopathically. It almost killed him. The stuff he was on caused false-low PSA levels, making it *appear* he was beating the cancer when in fact, it was growing and spreading. (Aaaargh!) He finally did chemo and radiation, but more rigorous to treat a more advanced stage of cancer. Please don't do that. It was so very hard on my mom and me to feel like there was something we could've said to convince him to do chemo and radiation sooner. His decision hurt all of us. Please keep that in mind; nobody fights cancer in a vacuum. (My dad finally beat it and lived another 22 years before passing from an unrelated disease.)

May God be near you as you make these life-changing decisions. I have a line from a Rush song going through my head - "If you choose not to decide, you still have made a choice."

Hugs to you,

Danean
Cleo likes this comment
I took oral 5-FU for 5 months, without breaks, after I could not take cisplatin anymore. This was for my stage 4 "maintenance chemo". With you taking breaks with it, these side effects may not happen to you. The biggest was neuropathy in my feet and a bad rash on my forearms. After stopping the Xeloda (oral 5-FU), the rash disappeared, but alas after one month after I stopped, I still have residual neuropathy in my feet. It is better, but not gone. For treatment, they have found that the oral 5-FU works just as well as the infusion, so more doctors are switching to it now. You should do fine on it, it has fewer side effects than most chemos.
Treatment for your stage is rough, but short. Hang in there, it should cure you at your stage.
Cleo, DeAnna like this comment
I took the 5fu pill instead of a port and two injections of mitomycin. My doctor was afraid my toddler would damage a port and I think it would have annoyed me. I put my 5fu pills in a weekly pill box to ensure I did not forget or take an accidental extra dose.

The 5fu gave me no major side effects and is often better tolerated than a port my dr said. It was hard to give myself the pills from a mental standpoint since I was so young and healthy and did not like any pharmaceuticals. I only got a little nauseous.

The mitomycin injections were what changed my blood counts.

I only had hair thinning that started after treatment ended. Chemo and radiation stay in your body for about six months.

My main problem was burning in my private area from the radiation. I was hospitalized for pain and neutropenia (blood counts and fever). The Dilaudid pain medication hurt my digestive system.

I should have been given estrogen cream to help heal the skin but no one even mentioned it. I only found out how wonderful estrogen cream is for the female area in a visit to my ObGyn. The cream helped immensely in about a week. Low estrogen and radiation damage to the skin were preventing healing.

Good luck. I find the ongoing issues to be improving am feeling pretty good now.

Susan
Sounds like the 5FU pills have fewer than the infusion. I had the infusion.

I had terrible pain during treatment. The worst pain my radiation doctor had seen...only when I had BM's. I had diarrhea a LOT. I was taking 14 imodium per day at the instruction of my oncologist. They gave me fentanyl patches and I had Hydrocodone for breakthrough pain.

My mouth didn't get that sore. I had minimal hair loss. My burns from the radiation were not as bad as others have posted. Lots of sitz baths. Silvadene Cream caused my skin to sluff off.

I used a portable bidet -- a squeeze bottle with a long nozzle that can be filled with water and used to cleanse the area.

The treatment is a short and tough treatment. Three years out, my anal rectal surgeon says my Stenosis has healed almost totally. My stool frequency is much more predictable now. I can finally eat lots of veggies and fiber now.

Informal support is really important.

So glad you are looking at treatment. This treatment has a pretty good success rate.
Both of my chemo drugs were given via IV--Mitomycin in the infusion center and 5FU via a pump that I wore for 5 days. As for side effects, I had some slight nausea (which was well-controlled with anti-nausea meds), mouth sores, fatigue, diarrhea, loss of appetite with weight loss, and pain from my radiation burns, which was worst when having BM's and urinating.

I know you are going to read through all of the responses given and it will all sound horrible. However, we are all still here! It was for 6 weeks for most of us, plus some recovery time, and totally doable. You can do it too!
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Vital Info

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April 10, 2018

February 18, 1966

Cancer Fighter

Cancer Info

Anal Cancer

February 21

Stage 2

2.1 - 3.0 cm

Grade 2

No

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