Dr. wants to stop TX help

just got back from my doctor, i have swollen tongue and ulcerated mouth.  I have also been lossing weight.  i weigh about 100 lbs.  I am at the half way point in TX, UND at 12 ( he didnt test at 4).  He said the ulcers would not go away and I should really STOP TREATMENT!  I have gone this far, I have had every side effect and now at the half way to STOP.  your thoughts PLEASE

[copyman]

sorry you are having such a rough time. i would base my decision to stop on what my biopsy was before starting treatment and how much of a VL. if i did not have much liver damage then i would stop and if i relapsed then i would wait for the new drugs coming out in a few years. these PI's look very promising.  normally i would say do whatever to keep treating but with your low weight i would cosider stopping. Best of luck with whatever you decide.

PS, I remember some talk on these boards about a mouthwash that the pharmasist makes up. I think it was called "magic mouthwash". not sure if it was for ulcers or what. maybe someone else will comment on it.

[Annie441]

Have you tried magic mouthwash?
I started tx at 100 lbs lost 10 lbs in the first month b/c of canker sores in my mouth and sores on my tounge, it was horrible even drinking water hurt. Orajel makes a good mouthwash that you can buy over the counter. I used it until I got to my Dr. and got a prescription for the magic mouth wash. Now my mouth is cleared up and I've gained 4 lbs.
Hope it gets better for you, Ann

[rita863]

the doctor gave me Lidocaine to try, and i have to go back on monday.  before today i did use magic mouth wash.  my doctors said this (ulcers) are a side from riba and once you get it, it doesnt go away...i not sure about that...my weight is 100lbs but i started tx at 118, so its not like i lost that much.

[Andiamo1]

Lesions of the toungue and mouth are common.  I had them every time I treated and they went away by themselves.  I would get a second opinion before stopping.  You should be able to find a good hepatologist at a medical center near you.

[Annie441]

I agree with Andiamo I would get a second opinion...You've come to far to just quit. My mouth has healed and I'm eating again so they do go away.

[redrodeo]

I have visited this site many times and it so helpful to know there are so many of us trying to get well.I decided to join when I read your question. I had the same experience
and it was something I wasn't prepared for. But I posted the question on another site and got this answer. Its a prescription, but the drug is called CARAFATE SUSP And you use a tablepoonful 4 times daily as needed swish and swallow 4 times daily. I never thought it would help but to my surprise it went away in a couple of days. My doctor never heard of it but he was willing to try. Anyway don't quit tx until you try this. I am on my 24wk geno 3 and this tx has been very hard. I lost about 30lbs.
Best of luck
Red

[Magnum]

Listen to your doctor...

Magnum

[rita863]

i am calling univ of penn tomorrow to find a doc to give me a second opinion.  i have invested alot in this tx, and i have lost alot.  i know i have bad days and some are really bad...but the outcome could be great, so i think a second opinion is needed.

[Trish77]

Nothing to lose in going for a second opinion, Rita.  Please let us know how it goes.  Hang in there!!!

Trish

[scratchinghead]

MerryBe's doctor wanted her to quit and she talked him out of it and I beleive she is having success.

[Marcia2202]

Here is something I found on the subject. They also mention something about an IV drug which can be used in severe cases. BTW, this article is from 2007....

Hope it can be useful. Marcia

What’s In Magic Mouthwash and Will it Help My Canker Sores?

Magic mouthwash is commonly used for patients getting radiation treatment or chemotherapy, which can cause painful sores in the oral mucosa. These formulas may contain opioids or non-opioid painkillers.

Magic mouthwash can also be used for pharyngitis, canker sores, and cold sores. One common formulation of the mouthwash contains one part each of viscous lidocaine, Maalox and Benadryl.

To use, swish and spit 5 ml every four hours. Another combination contains 12.5 mg Benadryl, 60 ml Maalox, 4 grams Carafate, and xylocaine. Swish, gargle and spit 5-10 ml of this formulation every six hours as needed.

While xylocaine, lidocaine and Carafate all require a prescription; you can make similar solutions with the other over-the-counter components. But don’t trust young children to spit it out.

Instead, just dab a small amount onto the sore with an eyedropper. You can use anything containing mint to soothe mouth pain, especially in children, who might be picky about medicine.

If you’re getting chemotherapy or radiation treatment, keep water by your side when you have dry mouth and take small sips to help you swallow and talk.

Some people have found that sucking on a peppermint, ice chips or a Popsicle during chemo can help keep mouth sores from developing. Frozen yogurt or smoothies may be easier for you to eat if you still end up getting mouth sores.

The Food & Drug Administration recently approved an intravenous drug called palifermin, which will reduce patients’ chances of getting mouth sores.

In an interview, veteran investigator Patrick Stiff, M.D. said, “After 40 years of [chemotherapy and radiation] causing painful mucositis, doctors finally have available a drug that actually decreases the severity and duration of mucositis in patients with hematologic malignancies.”

It might appear silly to be anxious about the odd “cold sore” or “fever blister,” or the somewhat swollen gums that bleed just a bit when you brush, especially when you’re fighting with cancer and its treatment.

However, not taking care of your lips, teeth, gums and mucosal lining of your mouth may mean extreme pain, inability to eat, severe weight loss, longer hospital stays, poorer response to therapy, sepsis, and death due to invasive infection.

In addition to its terrible symptoms, oral mucositis is associated with a number of other adverse health and economic outcomes. The use of magic mouthwash will not cure it, but it will certainly make this uncomfortable and unsightly condition easier to bear.

[rita863]

I spoke to my Primary today, she said 'DO NOT STOP TREATMENT, she set up an appt with another Doc, who is head of GI/Hep at Pennsylvania Hospital,.  So i am hopeful that he may have some meds to deal with the sides, and i believe he will more knowledgeable then my current GI.

They can knock me down, but they cant keep be down!
thanks for all the posts
Peace
Rita

[Marcia2202]

I'm glad for you, it would have been terrible to have to stop tx, because of the ulcers. If worse comes to worst, why don't you ask them to try the Palifermin. They seem to have really good results with it. If you google it, you'll find a lot of info on it. That is the generic name for the drug.

Good luck,  Marcia

[dogsledder]

I had severe mouth sores, etc. during tx. I used Mycelex tablets (Rx) and they did the trick. Keep your mouth hydrated. Do not let it dry out. I used Biotene mouthwash and Stopper4 (OTC). If you let your mouth dry out, pH drops, and all sorts of nasty things grow in your mouth and on your gums. I am now 3 mos post tx, still UND. Keep the faith and God Bless in your tx.