Hi everyone. I myself am nedNED after treatment for head and neck cancer. I did about 37 radiation treatments and 7 cisplatin treatments. It was a rough road. I am left now with the inability to swallow very well. I have been eating pasta for breakfast and dinner for more than 10 months. Sometimes for lunch too.
Anyway, this is not about me it is about my mom. We were both got a dx of stage 4 cancer but hers is lung cancer. NSCLC adenocarcinoma with pleural effusion and now she has ascites in her abdomen which was taken out via syringe. Her original treatment in Oct of 2015 was carboplatin and Altima. I do not remember how many treatments she had with that. Then she went on to maintenance with just the Altima. It is my personal belief that she started progressing prior to the doctor stopping the Altima. I think what I read showed that a couple of masses or nodes both grew ad shrunk. Being that some of it progressed that would be a sign to me that the Altima stopped being effective. Mom went on to do her first Opdivo treatment about 3 weeks ago. A day or two after her treatment she wound up in the hospital because she was bloating and was in pain. It was the ascites that was in her abdomen that was causing her discomfort. It had nothing to do with the Opdivo. While mom was in the hospital it seems and she says and the doctor agrees that she has gone backward. Now mom is supposed to restart the Opdivo and I am thinking that we are not going to get enough of the Opdivo in her before she gets worse. The doctor confirmed my feelings as she had the same fear. I was thinking that it possibly be a better idea if maybe she did some stronger chemo so that maybe it can either halt or possible shrink some of the tumors. I have read that some people did not see any progress in the first few rounds of Opdivo. Could anyone with a good deal of experience medically, tell me what they think. I wanted to maybe get her into a study, however, her ECOG is not at 1 Please help.
I need some advice or information - 1288867
ponderit
![]()
Posts:2
Forums
Reply # - October 5, 2016, 02:16 PM
I am sorry but I need a
I am sorry but I need a little more room. I have not read the posting rules due to a lack of time right now. So I will apologize if its against site rules to post in two consecutive boxes.
I am very fearful for one of the first times in my life.I lost my dad the day before my mother called to tell me she had lung cancer. I myself at the start of the post told you that I had stage 4 head and neck cancer (tonsil). According to most that I have read a reoccurrence of my cancer will most likely be the end of me within 6-8 months. The only thing that I have going against those numbers are the new meds that have been approved in the case of reoccurrence.Even with that by study values the new meds increase your life for a few months more than the old drugs did. The wonderful drugs that are Opdivo and Keyudra are not the miracles that television and the manufacturers would have you believe. I will add that I have been positive for 25 years too. I know what it is like to think you are going to die. I witnessed a miracle with the invention of protease inhibitors I was knocking on death's door and all of a sudden I was getting better. Miracles do happen. I lost my sister about 3 years go she was the age that I am now which is 53. It was a massive heart attack in her sleep. So now that my sister and dad died mom is the only one left with me. If I lose her I am by myself in this world. I am married but I was thinking in ways of immediate family. It has been a horrible year to go along with many horrible years I had dealing with the HIV and AIDS. In addition, I almost died 5 times in total. Actually very close.However, at this time of my life, it is very difficult to deal with much more sadness. I do not want to lose my mother to although it will happen. She was supposed to live a longer life as I have grandparents who are 95 and 88. That was a bad assumption. If you at all have any thoughts on what I asked I would like the feedback. Thanks
Seth
Reply # - October 6, 2016, 04:48 AM
Hi Seth,
Hi Seth,
I am so sorry to hear of your mom's diagnosis and all the sadness you have endured in your life, especially in the past year. I too have lost a number of loved ones at too young an age, and I know how alone it can make you feel and how much you want to help your mom.
It's true that it can be a number of weeks before the effect of immunotherapy can be seen. It's not necessarily that it isn't working, it just takes a while for the effect to be evident. Of course, some patients simply don't respond well to it. There are chemo options, with the strongest of them being docetaxel (Taxotere) and others being gemcitabine and navelbine. It would probably be worth a conversation with her doctor to see if it would be advisable to make a change.
Please continue to update us, and good luck with the choice made.
JimC
Forum moderator