TPF Chemotherapy or Hospice - Need HELP/ADVICE!

Slugger Gizzi
Slugger Gizzi Member Posts: 4
edited March 2014 in Head and Neck Cancer #1
Hi all,
I am new to this Cancer Network and have signed up on behalf of my Dad. He is 65 years old and battling tongue cancer. He has already went through the following treatments and is now faced with what seems like the final crossroad.

1. Surgery to remove tumor on base of tongue in Jun 2009
2. Cancer returned 2 months later in Aug 2009
3. Started Radiation/Erbitux treaments in Sep 2009 and finished 58 of 64 radiation treatments and 4 Erbitux treatmeants
4. Ended up in hospital due to severe reaction to radiation and Erbitux
5. Released from hospital in early Dec 2009 and was back home for about 2 months eating, moving around, and back on his feet
6. A Thrush infection started in his mouth and did not get better during that time at home
7. Due to the infection not healing the doctors moved up the PET scan and originally it came back as "Inconclusive"
8. Eventually, the doctors determined his cancer was back and was given a number of different opinions on next steps (enjoy the time he had left, attempt chemotherapy)
9. He is now battling an infection in his neck along with the tumor on the base of his tongue and has since had a feeding tube put in.
10. He is now faced with the decision of either simply going on Hospice and enjoying the time he has left or starting a regimen of either TPF or PF chemotherapy.

I am looking for any advice/help or someone who has had a similar experience where chemotherapy has worked and is now living today. Our concern is that since he has an infection his body may be too weak to go through with the chemo.

Any advice/opinions/thoughts would be greatly appreciated. Thanks to all!

Comments

  • soccerfreaks
    soccerfreaks Member Posts: 2,788 Member
    #2
    Personal choice
    You do not say how it was determined that dad's cancer is back (#8). I know that a tooth infection, cellulitis, and a lung infection caused my docs to pronounce me rife with cancer and facing perhaps 10 months to live in June of 2007. Antibiotics for the cellulitis accidentally cleared up the infection in the lungs as well, and while I ultimately underwent a lobectomy and a tooth extraction, I am now NED (No Evidence of Disease).

    My case may be a rare one, but if dad's latest diagnosis is the result solely of scans, I would advise more determinative testing (i.e., a biopsy).

    If that has been done, then this is a most personal decision that dad must make. Quality of life versus quantity of life comes into play at some point, and it becomes a matter of how much dad can handle, as you seem to know. My perspective, most of the time, is that one should avail oneself of every means provided in order to extend life. Even so, I have known a moment or two of such excruciating pain that I can well appreciate the thought process behind accepting the alternative.
    Additionally, my mom survived breast cancer for more than 20 years before contracted ovarian cancer and then discovering that her long-dormant BC had migrated to her brain. She was a true warrior and endured arduous therapy for some time, but when she decided to end it to live the end of her life without suffering the consequences of treatment, none of us argued with her.

    I wish your dad and his family the very best in these trying times.

    Take care,

    Joe
  • Slugger Gizzi
    Slugger Gizzi Member Posts: 4
    #3
    soccerfreaks said:

    Personal choice
    You do not say how it was determined that dad's cancer is back (#8). I know that a tooth infection, cellulitis, and a lung infection caused my docs to pronounce me rife with cancer and facing perhaps 10 months to live in June of 2007. Antibiotics for the cellulitis accidentally cleared up the infection in the lungs as well, and while I ultimately underwent a lobectomy and a tooth extraction, I am now NED (No Evidence of Disease).

    My case may be a rare one, but if dad's latest diagnosis is the result solely of scans, I would advise more determinative testing (i.e., a biopsy).

    If that has been done, then this is a most personal decision that dad must make. Quality of life versus quantity of life comes into play at some point, and it becomes a matter of how much dad can handle, as you seem to know. My perspective, most of the time, is that one should avail oneself of every means provided in order to extend life. Even so, I have known a moment or two of such excruciating pain that I can well appreciate the thought process behind accepting the alternative.
    Additionally, my mom survived breast cancer for more than 20 years before contracted ovarian cancer and then discovering that her long-dormant BC had migrated to her brain. She was a true warrior and endured arduous therapy for some time, but when she decided to end it to live the end of her life without suffering the consequences of treatment, none of us argued with her.

    I wish your dad and his family the very best in these trying times.

    Take care,

    Joe

    Thanks for the Reply
    Hey Joe,
    Thanks so much for the quick response, it is much appreciated! To answer your question in regards to #8 only a PET scan was done along with the Doctor's camera scope test that saw that a tumor or mass was there. However, no second biopsy was conducted due to the pain that my Dad is currently in.

    I tend to agree with you that one should exhaust all possible options before deciding to let the cancer win but it is easier said when I am not the one enduring the pain. Our family will support our Father with whatever decision he makes. Again, thanks so much for sharing you mother's story.

    I am hoping that maybe I will run into someone who has had a similar experience that had chemotherapy for their tongue cancer and what the outcome or reaction was to that treatment. At this point will wait discuss our options to figure out what makes the most sense for our Dad.
    Thanks,
    Mike
  • soccerfreaks
    soccerfreaks Member Posts: 2,788 Member
    #4
    Slugger Gizzi said:

    Thanks for the Reply
    Hey Joe,
    Thanks so much for the quick response, it is much appreciated! To answer your question in regards to #8 only a PET scan was done along with the Doctor's camera scope test that saw that a tumor or mass was there. However, no second biopsy was conducted due to the pain that my Dad is currently in.

    I tend to agree with you that one should exhaust all possible options before deciding to let the cancer win but it is easier said when I am not the one enduring the pain. Our family will support our Father with whatever decision he makes. Again, thanks so much for sharing you mother's story.

    I am hoping that maybe I will run into someone who has had a similar experience that had chemotherapy for their tongue cancer and what the outcome or reaction was to that treatment. At this point will wait discuss our options to figure out what makes the most sense for our Dad.
    Thanks,
    Mike

    You are welcome
    I had a 15 hour surgery for tongue cancer (replacement of half of tongue along with a radical neck disection) followed by chemotherapy and radiation. If you click on my name next to this post, it will take you to my profile (and blog if you are really a masochist). It might give you at least some idea of what survivors experience, what they think.

    Again, best wishes to dad and his family.

    Take care,

    Joe
  • ygfilart
    ygfilart Member Posts: 11
    #5
    I was diagnosed with tongue
    I was diagnosed with tongue cancer sept. last yar. I had the tumor removed (about 1/4 of my tongue) but it recurred and spread to almost my entire tongue in January this year. Doctors said there was no other option but to cut off my whole tongue. At that instance, I made research and found out about Fuda Hospital in China. Check the internet. I am on my second week recovering from various therapies which were never surgical. Now, I feel better by the day. I can talk and swallow with much much ease. And not a single part of my tongue was cut. I am supposed to go back for follow up tests and treatments if needed.
  • Slugger Gizzi
    Slugger Gizzi Member Posts: 4
    #6
    ygfilart said:

    I was diagnosed with tongue
    I was diagnosed with tongue cancer sept. last yar. I had the tumor removed (about 1/4 of my tongue) but it recurred and spread to almost my entire tongue in January this year. Doctors said there was no other option but to cut off my whole tongue. At that instance, I made research and found out about Fuda Hospital in China. Check the internet. I am on my second week recovering from various therapies which were never surgical. Now, I feel better by the day. I can talk and swallow with much much ease. And not a single part of my tongue was cut. I am supposed to go back for follow up tests and treatments if needed.

    Chinese Therapy?
    Hi,
    Thanks for your reply. China is not a possibility as my Dad is too weak to travel that far. However, you said that you recovered from "various therapies which were never surgical", what type of specific therapies did you have?
  • micktissue
    micktissue Member Posts: 430
    #7
    ygfilart said:

    I was diagnosed with tongue
    I was diagnosed with tongue cancer sept. last yar. I had the tumor removed (about 1/4 of my tongue) but it recurred and spread to almost my entire tongue in January this year. Doctors said there was no other option but to cut off my whole tongue. At that instance, I made research and found out about Fuda Hospital in China. Check the internet. I am on my second week recovering from various therapies which were never surgical. Now, I feel better by the day. I can talk and swallow with much much ease. And not a single part of my tongue was cut. I am supposed to go back for follow up tests and treatments if needed.

    Fuda Hospital
    I found several interesting links to Fuda Hospital, including one at Wikipedia (http://en.wikipedia.org/wiki/Fuda_Cancer_Hospital-Guangzhou) which states the following:

    "There is a common misunderstanding that Fuda offers cures. Understandably, many family members of cancer patients search the world for cures, but even Fuda can offer this. Fuda often makes is clear to patients and their families that the goal is to make cancer a chronic problem instead of a fatal one. The hospital's goal is long-term management combined with high quality of life. "Alternative" cancer treatment does not mean eastern medicines, Fuda's therapies are simply western therapies that are alternative to chemotherapy and radiation."

    Here's the google search link (tinyurl style) - http://tinyurl.com/yhnty3f

    Best,

    Mick
  • stevenl
    stevenl Member Posts: 587
    #8
    micktissue said:

    Fuda Hospital
    I found several interesting links to Fuda Hospital, including one at Wikipedia (http://en.wikipedia.org/wiki/Fuda_Cancer_Hospital-Guangzhou) which states the following:

    "There is a common misunderstanding that Fuda offers cures. Understandably, many family members of cancer patients search the world for cures, but even Fuda can offer this. Fuda often makes is clear to patients and their families that the goal is to make cancer a chronic problem instead of a fatal one. The hospital's goal is long-term management combined with high quality of life. "Alternative" cancer treatment does not mean eastern medicines, Fuda's therapies are simply western therapies that are alternative to chemotherapy and radiation."

    Here's the google search link (tinyurl style) - http://tinyurl.com/yhnty3f

    Best,

    Mick

    Fuda
    I too looked it up and did a little research on cryogenics. Mick is right. They do not try to cure the c just manage it. Cryo is interesting though in that they think it boosts the immune system to fight c cells. Will do some further research on that.

    Blessings,
    Steve
  • Slugger Gizzi
    Slugger Gizzi Member Posts: 4
    #9
    stevenl said:

    Fuda
    I too looked it up and did a little research on cryogenics. Mick is right. They do not try to cure the c just manage it. Cryo is interesting though in that they think it boosts the immune system to fight c cells. Will do some further research on that.

    Blessings,
    Steve

    Hey Steve/Mick,
    Thanks for the info regarding the Chinese therapies, I did not realize that. I will try and do a little more research on my own to determine what benefits these supplements may have.

    At this point my Dad has signed up for Hospice with the mindset that he will progressively get better with his infection as he is on very strong antibiotics right now. From there he is hoping to build up his energy and strength and meet with the Oncologisht in a few weeks to see if he has the strength to go through with chemo. At this point the Oncologists have even said that his current state being so weak plus the infection that the toxins from the chemo would most likely kill him.

    We are hopeful and staying positive that he will get better and have another shot that defeating cancer.

    Thanks again for all of your input and feedback.

    Best regards,
    Mike
  • ygfilart
    ygfilart Member Posts: 11
    #10
    Slugger Gizzi said:

    Hey Steve/Mick,
    Thanks for the info regarding the Chinese therapies, I did not realize that. I will try and do a little more research on my own to determine what benefits these supplements may have.

    At this point my Dad has signed up for Hospice with the mindset that he will progressively get better with his infection as he is on very strong antibiotics right now. From there he is hoping to build up his energy and strength and meet with the Oncologisht in a few weeks to see if he has the strength to go through with chemo. At this point the Oncologists have even said that his current state being so weak plus the infection that the toxins from the chemo would most likely kill him.

    We are hopeful and staying positive that he will get better and have another shot that defeating cancer.

    Thanks again for all of your input and feedback.

    Best regards,
    Mike

    FUDA
    Hi steve/mick. Yes, it's true that they do not offer cure, but no hospital can ever offer the same as well. But if one was to undergo chemo every three weeks and suffer the side effects, i don't think he'd ever be happy living at all. And unless insurance pays for it, how much more does one have to spend? The therapies they did on me was first, local chemo, which wasn't too hard. Chemo came next for four straight days, non stop. That was the worst part of my entire stay. The next therapies were pretty much painless. Brachytherapy, as they call it or iodine-seedling implantation. I felt like lots of tongue piercings around my tongue, but not painful. Only that i had to go on liquid diet at least for two weeks. The next was photodynamic therapy. I have to stay under the dark for about two to three weeks. The last is CIC- immunization against cancer cells. This therapy aims to prevent cancer cells from growing and to make others dormant.
    My total stay in the hospital was 17 days. I'll be back in three weeks for more tests and local chemo.

    While I was in Fuda, I have mingled with a lot of patients who were even in stretchers and wheelchairs when they first came to Fuda. Now they boast of the fact that they can walk a mile and not feel tired at all. And they are all glad that they do not have to suffer the side effects and the high cost of chemo anymore. My case is nothing compared to theirs. But they are very happy and strong and they say that even if they have to come back every two or three months, they will. But that won't be forever.
  • Hondo
    Hondo Member Posts: 6,636 Member
    #11
    different treatments
    There are a lot of different treatments that are now being offered, I heard about photodynamic therapy and it is offered at the Cancer Treatment Centers of America you can view them at http://www.cancercenter.com/default.cfm for more information. The Iodine seedling implantation is a treatment use for slow growing types of cancer like Prostate Cancer in men maybe Fuda has found a way to use it in other areas as well.

    I would think that at the lease it is very interesting to someone who is told there is nothing more that can be done for them to check it out.

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