Hi everyone. I'm a new member on this board. Just wondering if anyone here has an ostomy and has taken the chemo drug Avastin. I have a lot of bleeding from the crevice between the stoma and skin and, according to my doctors, it's caused by the Avastin. And they say there's nothing they can do about it. I've been off Avastin now for 6 weeks, and the bleeding is just getting worse, so I'm looking for someone with a similar experience who has been able to get a handle on it. I'm going to try flour or cornstarch tomorrow, and maybe some styptic powder this weekend. Any thoughts on that?

Serianna,

Sorry you're having this problem. I too have a stoma, but I did not take Avastin. Would it be possible to see or call on Ostomy Nurse. I have found them to be a wealth of information, especially where my stoma is concerned. I will be honest, bleeding does not sound normal to me, especially after 6 weeks. Seems to me if the bleeding is getting worse, something else is going on.

A few months after my surgery, I had a problem as far as super senitive area between my stoma and my skin, but I learned I was cutting/appling my waffers incorrectly (newbie). I believe there was a small amount of bleeding. My surgeon applied something to the area and sent me to the ostomy nurse for correct fitting waffers. My problem was solved.

Do you have an Ostomy Club near you, that would be a another source of information. I know there are some on line, but I have not used them.

Hope you can get this problem solved.

Lee

I assume you're the same person who posted on the uoaa (ostomy) board? I post there as Smokeysmom. If not, check UOAA.ORG forum and maybe send a private message. I saw a very similar post there just the other day.

I wish I had advice, only fear as I am schduled to begin FOLFOX with Avastin next week.

Please post what you learn.

Life2short,

I have not joined any uoaa (stoma) boards yet, been meaning to, just haven't found the time yet. Except for a few glitches here and there, I've had no problems with my soma. Did someone else also give this same advice?

Lee

Disregard my above response. I see I was confused.

lee

Smokeysmom -- Ya that was me on the UOAA board. Guess you can take comfort in knowing that apparently I'm the only person this bleeding problem has happened to. I did the FOLFOX thing, with Avastin, for six months. It wasn't bad really. I wouldn't worry about it.

Lee -- I don't think you were confused. I did talk to an ostomy nurse, but I think I'll look for another. I just don't understand why none of the medical people have an answer for me. This bleeding has been going on now for probably four months. How much blood can you lose and still be functioning?

Serianna,

Please don't give up on this until you have answers. If that means getting a second opinion from a surgeon, ostomy nurse, oncologist, DO IT !! It was my understanding, when they schedule people for surgery, they cut out the Avastin 6 weeks prior, so at 6 weeks, you should be seeing some improvement regarding this bleeding issue.

Life2short,

Were you able to get a new oncologist? While I did not have Avastin, I did get the Folfox regiment. You will do O.K. Drink plenty of water a day or two before each treatment. Eat healthy when you can, eat several small portions when on chemo, even if it's junk food. Remember to take it easy when on chemo.

Lee

Lee and Serianna,
Thanks for the encouraging words about FOLFOX. I've been dreading this terribly and have put it off for too long. I was supposed to begin chemo two weeks ago on the same day they put in my chest port. Port surgery ended up behind schedule so I couldn't start chemo that day. Oncologist gave me two choices - begin tomorrow or wait two weeks (she's out of the clinice every other week and prefers here chemo patients in the same week she's in). I was quite sore where they put in the port so I opted for the two week wait. I'd been feeling great, even hiked and skied the weekend before. Over the last two weeks I've become very sick - general malaise... tired, achy, anxious.

Had an appt today at the local cancer facility to determine if I'm a candidate for Y-90 treatments. They are now going to put my case before the "tumor board" at that hospital next Tuesday. They're advising me to hold off on chemo - especially the Avastin part until at least Wednesday. Funny, a day or two shouldn't make a difference but I can feel myself getting sicker by the day. Or perhaps I'm imagining it. Seems I can feel my liver for the first time ever.... very worried. Can't decide what is right for me. My gut seems to be telling me to start the chemo.

Did either of you get good results from the chemo? Any tumor shrinkage? What's your prognosis? Thannks for any info you can share.

Hi, I am probably the one who posted on the UOAA board. My husband had a problem during chemo with his ostomy pouch filling with blood. We went to the E.R. the first time it happened, only to be sent home when they couldn't determine the source of the bleeding:dizzy: We went to see the Dr. that had preformed his colonoscopy, the next morning. It was one of the E.T. nurses who finally found the problem. He had a few veins near the surface of the mucosa that would bleed from friction with his pouching system when he would move around. She tried to seal them up with silver nitrate. When that wasn't working she had the Dr. cauterize them. Problem solved. It was most likely the chemo that made the veins so weak to begin with. Before chemo started he was doing great with his ostomy. By the time chemo was finished we both were at our wits end trying to keep anything on him for more than 40 hours. Thankfully his reversal went well and he is doing great. His problems now are dealing with the pain from nerve damage. We are hopeful that it will get better as time goes by. Hugs Kathy:wave:

larbo's wife,

Thank you, silver nitrate is what the surgeon used on me when I had that VERY SENITIVE AREA around my stoma.

Serianna, you may want to bring this to your doctor's attention. It could be the solution. That or possibly cauterizing the area. Yep, I am 99% sure I was in the beginning stages of chemo when I had that problem too.

Lee

life2short,

In answer to your question regarding success of chemo. Yes, I feel I benefited from it. My cancer was stage 3, which means it was in my lymph nodes. I had surgery to remove my tumor. I had chemo to kill the cancer cell in my nodes. I've been off chemo for about 20 mths now, and so far everything is fine.

I'm not familiar with the Y-90 treatments, but I hope you are selected for it. Would it be possible to start some chemo on a temporary basis like 5FU and Lucorovin? Those two drugs have been around for 25+ yrs and I believe are considered mild as far as chemo goes. They usually use these in conjuctions with Oxplatin (Folfox) &/or Avastin. Will this 'tumor board" be getting back to you soon. I certainly hope so. Good luck

Lee

I'm with Lee on the effectiveness of the chemo. I was admitted to the hospital immediately after my colonoscopy. The surgeon said the tumor was too large to remove surgically and did a colostomy instead. I fortunately was referred to a really good oncologist by one of the nurses at the hospital. My CEA marker was at 170 (extremely high) when I started chemo and 5.5 when I finished. Of course, I'm at stage 4 so it will keep coming back.

Larbo's wife, thanks for the info. When I saw the surgeon about the bleeding she put silver nitrate on too, but my the time I was halfway home I was soaked in blood. I mentioned cauterizing the veins, but I don't think she believed how much blood I was losing. What speciality was the doctor who did that for your husband?

Lea, interesting to hear that you had Folfox with stage III cancer. It sounds like you have a very aggressive oncologist. When I came out of surgery, my surgeon warned me that I was a very serious case with cancerous lymph nodes found well outside the rectal area. Though I was still considered Stage III with regional mets, he was very concerned and said I should persue aggressive chemo. My oncologist was very nonchalant about it and said 5FU was the protocol for stage III. Period. (Okay, my memory is poor, maybe it was 5fu with Leukovoran, but I don't really think so. I was concerned and made an appt for a second opinion. By the time I had that appointment, they had found liver mets. The second opinion recommended FOLFOX and of course, by then, my oncologist agreed because I had passed to Stage IV and therefore there was a new protocol.

Yes, I need a new oncologist. Working on that right now!

Thanks for the feedback on the results of your chemo. I SO hope I don't end up with a bleeding stoma!

life2short,

Please, please get a new oncologist, Folfox (which consist of Oxyplatin, 5FU, Leucolorin, Bova) IS the standard treatment for stage 3 colon/rectal cancer. It was approved by the FDA about 2 yrs ago for stage 3 colon cancer. 5FU, leucolorin, Bova was the standard for many yrs. Avastin they tend to use with stage 4 along with folfox. It is because of these new drugs, Oxplatin and Avastin, that people with stage 3 and stage 4 are NOW able to fight and beat colon/rectal cancer. Along with new surgical procedures, options are available now that weren't there a few yrs ago.

I wish you much success on this journey. I will be away for a few days, but I will be praying for you.

My stoma actually bled VERY little. It was SUPER senitive in areas where the stoma meets the skin). No one, (and I mean no one was allow to touch it). When I show it to my surgeon, she said You've got _______ (some medical term). Followed up with, I'm sending you to the ostomy nurse. Seems my stoma had changed since my 1st fitting following my surgery. I now believe my stoma changing size, and chemo probably led to my problem. The good news, my surgeon put silver nitrate on the senitive area, had a new fitting with in 24 hrs, and my problem clear up with in 2 days. I haven't any problems since.

Lee