Update on Mom

littlemisskitty
littlemisskitty Member Posts: 35
in Head and Neck Cancer #1

I don't know who remembers me but I posted on here for the first time last year when my mom first found out she had head and neck cancer and had moved to her lymph nodes. Well she finished treatment. Terrible side effects. She finished first week of September with 12 chemo treatments and 34 radiation treatments. She can't eat, lost 30 more pounds during it, can't move her neck much at all, is still choking on anything that isn't liquid and has a lot of pain still. She ended up with a broken tail bone since her bones were so weak (and a sciatic nerve pain) she is still dealing with, ended up with a blood infection that was treated and with all that, of course she was feeling just terrible.

We just did her first Pet Scan and to put it mildly, it lit up like a Christmas tree. It's now in her neck again (what they thought to be an infection was actually two cancer tumors so it grew in the same spot they operated, radiated and chemoed. go figure), in her spine, her lungs, her kidneys and her right leg. She has been complaining of pain all over moving around, being tired and feeling downright terrible. They bumped up her test because she was complaining so much. So since it's everywhere they are talking about prolonging life and quality of life. She was told at max a year with some sort of treatment. Probably weeks maybe up to 12 without treatment. They were discussing the option of a clinical trial of immunotherapy. Then he mentioned chemo, three drugs until it just stopped working. I get the latter option but has anyone heard anything about immunotherapy. I know it works on lungs but does it work on head and neck at all? I get it doesnt' cure but does it buy time and is the side effects as bad as radiation was on her?

Comments

  • wmc
    wmc Member Posts: 1,804
    #2
    Very sorry to hear about your Mother.

    From the little I know from resurch on immuunotherapy it is more like chemo and will give you just some more time, but won't cure. I am a firm beliver as to never give up. I also believe in quality of life some times is better than quanity. I watched my mother go through kidney failure and dialysis and tried all types, but there was really no hope as she often had congestive heart failure. She stopped the dialysis and asked for my blessing and understanding. What ever your Mother desides to choose you will need to support her with the dission and understand. You both are in my thoughts and prayers, just be at peace.

    Bill

  • Ladylacy
    Ladylacy Member Posts: 773 Member
    #3
    Your Mother

    I am so sorry to hear that your mother's cancer has spread.  It is a hard decision quality vs quantity.  I know because my husband made the decision when only thing offered was more chemo and he was told up front would only prolong, not cure, and possibly hasten.  He decided no more treatment.  His cancer wasn't as wide spread as your mother's.  I can honestly say that he had a good quality of time before he started downhill and has since passed away.  Just remember doctors can't really say how much time a person has left.  That is decided by the man upstairs.  Our doctors never said how much time my husband had left with or without treatment.  I only know what I read about his second primary and that was 24 months with or without treatment.  He actually outlived the 24 months. 

    As far as your mother, can her body handled more chemo?  That would be my main question to the doctors.  As far as immunotherapy that is still fairly new.  It will be a hard decision but one that should be left up to your mother.  I don't regret letting my husband decide and neither did our sons.  Cancer is a horrible and it affects the whole family in different ways.

    Wishing you and your mother the peace and comfort

  • Raddude
    Raddude Member Posts: 84
    #4
    My prayers

    go out to your mom and you. Sounds as if she has suffered greatly. I know these are the toughest cross roads one can face. I truly wish you and her the best. The more I read on here the longer my prayer list becomes.

  • corleone
    corleone Member Posts: 312 Member
    #5
    I’ve seen at least one person

    I’ve seen at least one person here on this forum (can’t remember) who had Immunotherapy.

     

    Check with the Dr. if she is eligible for any ongoing Immunotherapy studies that are still recruiting. As was said, it won’t cure it, but might prolong the life, and more importantly with fewer side effects that chemotherapy. From what I’ve read it’s also effective on H&N cancers, but like always, different from person to person.

  • MrsBD
    MrsBD Member Posts: 617 Member
    #6
    Immunotherapy

    There have been several successful trials with new immunotherapy drugs such as Keytruda and Opdiva. They are newer and said to be twice as effective as cetuximab, which is what I had. If it was my decision to make, I'd investigate those options. You are in my prayers.  

  • louhou13
    louhou13 Member Posts: 46
    #7
    Immunotherapy option

     

    Hello, I previously posted  a similar post under a different heading. I, obviously am a big fan of immunotherapy. 

    Hello, I do not post often but do read the posts. I was originally diagnosed in 2012  with SCC stage IV tonsil cancer with lymph node involvement on both sides of neck. I had a modified bilateral (ear to ear) neck dissection. No chemo or rads as I had those for lymphoma 20 years prior. I was NED a until a recurrance in 2013. After refusing treatment, I was given 6 months to live and by March 2014 was coughing up a good amount of blood and feeling the tumors getting bigger. In April 2014 I joined a clinical trial for MEDI4736 at The Angeles Clinic in Los Angeles with Dr. Ani Balmanoukian (The trial is offered in other places). 1 hour infusions 2X/month with practically no side effects (some itching for 2-3 weeks) The trial lasted a year and to date I'm NED. About MEDI4736: MEDI4736 is a human monoclonal antibody directed against programmed cell death ligand 1 (PD-L1). Signals from PD-L1 help tumours avoid detection by the immune system. MEDI4736 blocks these signals, countering the tumour’s immune-evading tactics. MEDI4736 is being developed, alongside other immunotherapies (IMTs), to empower the patient’s immune system and attack the cancer.

    The FDA has already approved anti PD-L1 drugs for some cancers and more approvals are on the way. Immunotherapies empower the entire immune system to attack cancer at all fronts ...not just hot spots that show up on CT or PET. 

    I"m more than happy to answer questions if you would like.

  • Hondo
    Hondo Member Posts: 6,636 Member
    #8
    Side effects

     

    I am sorry to hear that is all came back, and that your Mon is suffering with so many side effects. I too live with some terrible side effects from all the treatment and it makes hard just to get up some mornings. Just stay with her and let her know every day how much you love her, sometimes that is all that can be done.

     

    Tim

  • hwt
    hwt Member Posts: 2,328 Member
    #9
    Hondo said:

    Side effects

     

    I am sorry to hear that is all came back, and that your Mon is suffering with so many side effects. I too live with some terrible side effects from all the treatment and it makes hard just to get up some mornings. Just stay with her and let her know every day how much you love her, sometimes that is all that can be done.

     

    Tim

    Sorry

    So sorry to hear your Moms situation. I guess one of my questions would be if any options would relieve pain in addition to prolonging life. Prayers to you and your family.

  • littlemisskitty
    littlemisskitty Member Posts: 35
    #10
    hwt said:

    Sorry

    So sorry to hear your Moms situation. I guess one of my questions would be if any options would relieve pain in addition to prolonging life. Prayers to you and your family.

    I'm currently seeking out

    I'm currently seeking out help from two friends I have that are into herbal medicines instead of the traditional pain killers since they have so many side effects and mom can't swallow pills limiting that anyway. I don't think they make morphene in liquid form other than IV and she doesnt want to spend her last months laying in a bed not living so we are looking at all options including her participating in this trial hoping that she does indeed get the chance to try immunotherapy. I'm leaving it up to her what she does concerning the trial but I'm always an optimist and looking for ways to create options. Shes' still in the depression state. 

  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    #11
    T & P

    littlemisskitty.

    It is always heartbreaking to read a post like yours.

    My thoughts and prayers are with your Mother.

    Matt

  • Ladylacy
    Ladylacy Member Posts: 773 Member
    #12
    littlemisskitty said:

    I'm currently seeking out

    I'm currently seeking out help from two friends I have that are into herbal medicines instead of the traditional pain killers since they have so many side effects and mom can't swallow pills limiting that anyway. I don't think they make morphene in liquid form other than IV and she doesnt want to spend her last months laying in a bed not living so we are looking at all options including her participating in this trial hoping that she does indeed get the chance to try immunotherapy. I'm leaving it up to her what she does concerning the trial but I'm always an optimist and looking for ways to create options. Shes' still in the depression state. 

    Morphine

    littlemisskitty -- morphine is in liquid form.  My husband was on in for the last several months of his life.  It went directly into his feeding tube every 4 hours.  My mother was on it to many years ago and we put it under her tongue and it went into her system that way.  In fact I was told I could put it under my husband's tongue but the feeding tube was easier for him.  My husband was able to get up and about while on the morphine until the last month.   They also had him on Ativan the last couple of months first just one at night to help him sleep and then we had to go to every 4-6 hours.  This helped him with depression too.  Just remember everyone reacts differently to medication but Joe had no problems with either medication.

    Wishing you and your mother peace and comfort -- Sharon

  • wmc
    wmc Member Posts: 1,804
    #13
    littlemisskitty said:

    I'm currently seeking out

    I'm currently seeking out help from two friends I have that are into herbal medicines instead of the traditional pain killers since they have so many side effects and mom can't swallow pills limiting that anyway. I don't think they make morphene in liquid form other than IV and she doesnt want to spend her last months laying in a bed not living so we are looking at all options including her participating in this trial hoping that she does indeed get the chance to try immunotherapy. I'm leaving it up to her what she does concerning the trial but I'm always an optimist and looking for ways to create options. Shes' still in the depression state. 

    This might help

    This is a list of pain meds from asprin to the strongest. It might help with her pain as there is some that are stronger than morphene and many pills can be crushed if they are not time released. The Fentanyl is a patch and even as a lollipop.

    http://www.vaughns-1-pagers.com/medicine/painkiller-comparison.htm

     

    This is also found in our Superthread. Will keep you both in my thoughts and prayers. May she stay pain free and at Peace.

    Bill

  • Barbaraek
    Barbaraek Member Posts: 626
    #14
    I am so sorry

    to read about your mom's pain and suffering...and recognize how hard it must be for you too. We will definitely keep you in our thoughts and prayers here on the board. 

    Does your hospital/center where you are going have a palliative care team? They should help you get some solutions for the pain that your mom is dealing with.

    Quality of life is a big issue. Another thing to do now, even though it may be hard, is to talk about health care directives and health care proxies. Although it was tough to do I have a better understanding of what my husband considers to be "extreme measures" and what type of quality of life he is comfortable with. When/if a time comes to make big decisions - you want to have thought them through and talked about them beforehand.

    Blessings to you and your mom,

    Barbara

  • lifeisDHA
    lifeisDHA Member Posts: 64
    #15
    I am so sorry to hear your mother's

    suffering. It seems immunotheraphy would be a good option for her. I heard the side effect is not as strong as chemo. I pray you mother will feel and get better

  • NelsonOng
    NelsonOng Member Posts: 47
    #16
    So sad....

    Hi, Im sori to hear that your mom is in pain but

    no harm trying taking old ginger.  I'm taking it as

    well. Ginger has so many benefits too. 

    http://www.greenmedinfo.com/blog/ginger-10000x-stronger-chemo-taxol-cancer-research-model-1

     

     

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