doc wants to stop treatment, help

[rita863]

I 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

[Trish77]

That's excellent news on the 2nd opinion .. good luck with that and keep us posted.  I'm glad you've gotten a bit of relief from the mouth sores.  Keep it up, Rita .. you're doing great!!!  

Take care.

Trish

[rita863]

merry be,

i started tx jan 4 my total weight loss to date is 16lbs. my not tongue is no longer swollen, it has leisions, but looks and feels much better than yesterday.  i have the appt for the 2nd opiniion.
hanging in there
thanks

[merryBe]

is weight loss sudden,  urinating alot?you need to determine if you've been pushed into diebetes before deciding.
also lots of things swell the tounge, among them HCV and pituitary insufficiency, some swelling with sores is common, but it can prove life threatening is too much swelling occurs.  
You can use Magic Mouth wash, or Oasis..but best idea is to see a dentist and make sure you don't have a secondary infect of the gums, common in treatment..there are several types of yeasts and lichens that can grow on the gums when on chemo...treat them, and you don't have to stop tx.
also I would wonder if they have you on too high of dosing.  SOC for many docs is to put 100 lb females on the same dose as 250 lb men....the reasoning there escapes me.

like everyone said get into see a good liver doctor...even if it means driving a couple hours. You should be able to get an emergency second opinion if you explain the situation. They were ready to pull lots of us off treatment the moment some side effect didn't suit them, but it is your life that hangs in the balance so you really need to know this is the only course.

I have seen people in here get pulled off tx for a couple weeks and then put back on...obviously because they had a complication or too much tx drugs and needed  a rest and to start again....that happens when blood platelets get too low etc...

anyway, hang in there, and I hope you can get some answers.
MB

[rita863]

thanks for all helpful information,  i have an appt, with another GI//Hep specialist.  I know lessening dosage is not the answer, and i think i have gone to far to quit now (even though somes days i REALLY  want to)  if they can just keep the sides at bay, so that i can still work, then i think i can make it.


good luck Imagaine  hopefully your sides are not too bad this time!

Denise & Lorraine ~ i have been using the mylanta with lidocaine and my mouth is getting better!

And the new doc is at Pennsylvania hospital, i have an appt june 4th.

thanks all

huggs to all of you

Peace Rita

[Imagine121]

I agree with the suggestion to seek a second opinion. I am now on my second treatment for genotype 1. For my first treatment I had side-effects and my doctor tried lessening doses and eventually stopped treatment at 36 weeks. I was UND at 12, 24, and 36 weeks but the virus returned in a VL test at 5 months post-tx. I can't do the first treatment over but I know for this treatment, I want to stay the course if at all possible.

Today is Week 3 for me and I just took my weekly injection of Peg-Intron (I did Pegasys on the first go round). I'm now waiting for the weekly bought of flu symptoms.

Hang in there and seek other medical opinions. Sometimes having your condition looked at with a fresh perspective can pick up new solutions. I'm sorry I can't give advice on mouth ulcers; I seem to have problems with my sinuses. Why can't someone find treatment drugs with nice side-effects?

[GSDgirl]

I also used the benadryl & mylanta, worked great.  The nurse practioner at my regular doctor also gave me a script for a mixture of the benadryl, mylanta & (I think) zylacaine.  I think the nurse practioner knows more than my first gastro.  I would keep going also.  Some of the things that I ate about 8 years ago when I had braces was, instant mashed potatoes with some sour cream mixed in, not too stiff so they go down easy.  Carnation instant breakfast with ice cream & milk.  ANYTHING with calories that even sounds like it might be good, to put some weight back on.

I also learned more from this site.  

Denise

[lmr28]

Hi!  I have had an awful time with mouth sores! (also little blisters in my nose, ears, and now on my hands...)  For the mouth sores I mix equal parts children's liquid Benedryl and Mylanta (you can squeeze in some OraGel also, if you'd like) and SWISH.  I won't lie- it tastes as bad as it sounds- but it DOES work.  It coats the mouth, eases the ulcers, and for whatever reason helps the healing.  I have also mixed it, and then soaked a Q-tip in the mix to hold on specific sores.  

"I have learned more from this site, then from my dr. I wish i was a little more educated before i started, but hey i am learning FAST!"   Sigh~ In a perfect world!   Just learn as you go and let these tried and true experts help you along!  
Hang in there!  1/2 way there is NO TIME TO QUIT!!!!!!!!!!!  You are UND and sailing towards SVR!!!!!!!!!!!!!

Keep in touch and take care of yourself!
~lorraine

[rita863]

thanks Trish i posted in Hep C site and others who treated have had them, and sometimes they do go away.  i have a call into a hepatolgist at Univ of penn.  I think because i live in the suburbs,my doc may not see or treat many Hep C patients,  I'm thinking at Penn, in the city they would know and treat many more people with Hep C.
I have learned more from this site, then from my dr. I wish i was a little more educated before i started, but hey i am learning FAST!

[Andiamo1]

I posted on the other side - Trish is right on!

[Trish77]

Rita,

A few things you've said about your doc have really made me wonder. I think you have a doctor who is inexperienced in treating persons with Hep C.  If I were you, I would get my a$$ to another doctor pronto for a second opinion.  See a hepatologist, a GI who is experienced in treating persons with Hep C.  Head to a teaching hospital.  

I would NOT stop treatment based on your mouth sores only.  Easy for me to say, I don't have them .. so I'll be hoping others who had / have mouth sores will jump in and tell you their experiences.

Hang in there.

Trish