Topic: Worried!

Hi, I am new to this forum.  My mother has had cholangiocarcinoma since about 2000.  A year later she had 1/2 her liver and part of her diaphragm removed.....a horrendous surgery!  She went through another major surgery later also.  Then she has been through chemotherapy for a 2-3 years and a short round of radiation.  She then was said to be in remission for the past 2 years or so.  She has been in a lot of pain all the way through.  For the past year and a half, she has been on Morphine around the clock along with stomach medicine and Phenergan and Ativan.  She is allergic to so many things....so it is hard to get the right medicine.  Well, yesterday she went to the ER and was told 2 of her ribs are deteriorating and they prescribed her Flexeril.  She just recently had another CT scan which she has every 3 months and she gets those results on Friday along with her port flush.  I just cannot bear to lose her.  The doctors have been telling her it is a miracle she is here.  They couldn't believe that she could be in remission for so long.  But now I am so worried.  My aunt said that it is possible it could be arthritis.  I don't know.  She is only 52 years old with three children (one being myself - her oldest daughter and best friend!) and two grandchildren 4 and almost 2 years old.  She has so much to live for!  I have prayed and prayed and prayed and prayed for her pain to cease and for her to be healed.  I thought she told me once she read that a bone marrow transplant could cure this.  But at this point she told me today that she is way too tired to go through anything else.  I don't know what else to do?

Re: Worried!

Hello angiecat,
I'm so sorry to hear your mother is suffering so much - and that you are, too. I think it's wonderful that she was able to battle this cancer for so long, but her doctors should be managing her pain better - it's just not right that she should suffer like this. I have nothing to offer you but my good wishes and a compassionate ear, to let you know you're not alone. But I also wanted to ask you about the rib deterioriation, as I've never heard of that before. Is this something that is caused by cc? Or is there cancer in the ribs? I think the knowledgeable people on this board can better help you if they know the cause of it.

Best wishes to you and your family -

Joyce

Re: Worried!

Angiecat,

I am so very sorry to hear about your Mom.  Please, don't give up hope.

There are cases where bone had been invaded by CC.  I believe Caroline Stouffer also has written about it in her blog. 

Best of everything
Marions

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Worried!

Angiecat,
The pain your mother is experiencing sounds terrible and I am sorry she is suffering.  Have you or she considered acupuncture? Although classed as an "alternative" medicine, it does have scientific papers written on its positive effects on treating pain. In fact, even the NHS in Glasgow and the Swedish medical system (both socialised medical systems that like to pinch pennies) offer acupuncture through their systems since it does work for some people.

I will send very good thoughts to you and your mother. Pain should be managed better and I do hope they figure something out.

Kris

Cancer is a word, not a sentence.

36 year old patient with buckets of hope

Re: Worried!

Thanks so much for your replies and support.  It means a lot to me.  She does struggle with the pain control and says she "does not want to miss a thing!"  She hates taking the medicine, but even when she does it does not seem to help.

As for her ribs, we only know what the ER doctor said.  But she gets her results from her last CAT scan from her oncologist on Friday, and I will keep everyone informed of those results.

Again, thanks so much!  And I will never stop praying and I will never give up hope for her and for all of you!

With Love