anal cancer who is afraid of chemo and radiation

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dcampbell71767
dcampbell71767 Member Posts: 1
in Anal Cancer #1

2014-10-23

I am trying to find someone in Las Vegas to help a friend of mine with anal cancer. He is losing hope as he is afraid of the chemo and radiation that has been suggested to him to cure his anal cancer. He lives with his 90 year old mother and is a retired car salesman. He has lived and worked all his life in Las Vegas and has devoted himself to caring for his mother. Now he is unable to drive to appointments and has indicated that he would like to try some alternative methods to cure his cancer. I would appreciate some feedback. He can't see well enough to look at the computer now so I am trying to help. My son is his friend of many years and he has asked me to help find some answers about the radiation and chemo that is so frightening to this fellow. Thanks for any help. I am in LA and my number is 323 921-2664.

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  • rsmithey
    rsmithey Member Posts: 1
    #2
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    Radiation and Chemo

    I am a surviver of Anal Cancer. 1999 I was diagnosed, they used both chemo and radiation at the same time. It is a tough go, but I am still here today. My daughter was going into the first grade and she is now in Grad School TCU. I do have some side effects, but I am alive. 

  • mp327
    mp327 Member Posts: 4,440 Member
    #3
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    dcampbell

    I'm very sorry your friend has received this diagnosis and I can understand his fear of the treatment--it is a rough go.  But the good news is it is only for 6 weeks, which is very short, as compared to treatment for other types of cancer.  I do not know what tests were used to diagnose your friend's cancer or what stage his cancer is.  However, the usual protocol is 6 weeks of Monday through Friday radiation and 2 rounds of chemotherapy.  While it is a tough 6 weeks, it is very doable--so many of us have done it.  I am here to tell you that your friend needs to not delay seeing a colorectal specialist for referrals to a medical oncologist and radiation oncologist. 

    I will tell you up front that I have little or no faith in alternative treatments for anal cancer.  The standard protocol of chemo and radiation has a high success rate and once done, most people return to a normal life with few long-term side effects.  I completed treatment for this disease in September 2008 and am now heading into my 7th. year as a survivor.  I do everything I did before treatment and I ran a full marathon 2 1/2 years ago.  The reason I tell you all of this is because for a short few weeks, the pain of treatment is definitely worth it.  My recovery was quick.

    Your friend needs to do this, bottom line.  His cancer will only grow if left untreated.  I would hate to see him put it off and find out later on that his cancer is at an advanced stage, reducing his chances of a complete remission.  Getting a cancer diagnosis is scary, getting treatment is scary, but not doing anything to fight it never turns out well.  I hope your friend will seek standard treatment ASAP and I wish him all the best.  He cannot be here to care for his mother if he is not here, if you get what I'm saying.

    Martha 

  • lilou
    lilou Member Posts: 23
    #4
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    anal cancer

    Hello, The treatment of the anal cancer is radiochemotherapy. There is no alternative. Your friend has to ask  all the questions to  his oncologist.  The anal cancer is sensitive to this treatment and the chances of cure are big. Good luck.

  • nicotianna
    nicotianna Member Posts: 209
    #5
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    dcampbell

    Ditto to Martha's reply.  ACS has a wonderful service, Road To Recovery, in which volunteers take patients to  apponitments & back home.  Ck. your local office.

    Nic

  • mxperry220
    mxperry220 Member Posts: 493 Member
    #6
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    Get the Standard Treatment

    I have been free of anal cancer since January 2009.  I was diagnosed as Stage 2.  I received the standard radiation and chemo treatment for anal cancer.  My post treatment side effects were not as severe as some on this board.  It seems women have more post treatment side effects than men in reading this blog.  I do have some permenent side effects but am grateful the treatments worked.  I STRONGLY recommend your friend follow the doctors advice and continue with the standard treatment for his Stage of cancer.  The major permenent issue I have is more BMs per day than before treatment.  My norm before treatment was 1-2 times per day.  It is now 3-4 times per day.  Hope this helps a little.

    Mike

  • sandysp
    sandysp Member Posts: 868 Member
    #7
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    None of us wanted to have chemo/radiation

    Your friend is scared of this treatment. We all were. It's hard to fathom. I was one of the ones who said I would not go through cancer treatments. My husband helped me face it one day at a time. Then I felt better than I had been feeling within a couple of weeks of starting treatment. Cancer is way worse than the treatment. I was symptomatic and in pain 24/7 for at least a couple of years before passing blood and getting diagnosed.

    It got tough towards the end of the six weeks and a couple of weeks after that. Also, it takes a while ( a couple of years for some of us, including me) to get back to feeling really healthy. I was three years last tx August 18th. I didn't realize it at the time (since my Oncologist told me not to worry about it, they were going to make me well) but I was clearly stage 3b and not just T2N1. There were many lymph nodes involved including an iliac node. I just learned for sure I have no metastasis after a bit of a scare. But there are people who are on this board that were stage 4 many years ago and the treatment protocol worked for them also. Since your friend has a very good chance of getting cured from a horrible disease, it makes sense for him to endure. Once he starts feeling good again, he will appreciate how precious his life is.

    The rides from the American Cancer Society will help your friend a lot. 

    I know it is hard to watch a friend go through this process but if you can, stay close and offer support from this board since he can't see the computer.

    People here are wonderful. The good news is, we all went through it and we survived. I believe we have had people in their 80's accomplish the treatment (at least there was someone's mother).

    All the best,

    Sandy

  • Ouch_Ouch_Ouch
    Ouch_Ouch_Ouch Member Posts: 508 Member
    #8
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    nicotianna said:

    dcampbell

    Ditto to Martha's reply.  ACS has a wonderful service, Road To Recovery, in which volunteers take patients to  apponitments & back home.  Ck. your local office.

    Nic

    Definition.

    ACS = American Cancer Society.

    There may be other local groups as well that provide transportation. Ask the radiation oncologist's office. Was he a veteran? Local veteran's groups are great about providing transportation for other vets.

    Does his mom have a social worker? If not, contact her MD's office to ask for a referral or call the Department of Social Services. Your friend may be able to arrange for a temporary nursing home stay for the lady. He probably won't be able to care for himself AND her during treatment. And right now, it's all about him getting through the treatment with as much rest as possible. (He might need you to cook for him.) He'll be under the weather for at least 2-3 months after treatment, too.

    Make sure that he gets physical therapy meant for cancer patients after his treatment is over. It will help him recover from the weakness and might help with residual pain.

    I was plenty scared AND have a terrible needle/scalpel phobia. All the needles and the port insertion were as bad for me as the cancer treatment, but I did it. And although I came close, I never actually passed out from the pointy beasts! Please don't allow your friend to die from lack of standard protocol treatments. They are the standard protocols for a good reason - they work!

  • qv62
    qv62 Member Posts: 434 Member
    #9
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    dcampbell

    The others have given out such wonderful advice, please share it with your friend, I hated the treatment days and the days after even more, but having gotten a good bill of health on my scans to show there was no tumor after the fact I have no regrets,

  • Ouch_Ouch_Ouch
    Ouch_Ouch_Ouch Member Posts: 508 Member
    #10
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    Knowledge is power!

    The National Comprehensive Cancer Network (NCCN) - http://www.nccn.org/ - creates the standard protocols for the various cancer treatments that the rest of the US providers generally utilize. You can register for free at their site. When I registered, I'm not sure why, but the site wanted to know what company I worked for. I entered "American Cancer Society Anal Cancer Forum" and they let me proceed, but feel free to enter your own info. Once you are registered, go to http://www.nccn.org/professionals/physician_gls/PDF/anal.pdf for a PDF of the current standard protocol for anal cancer. You can read it to your friend and have him take it to his oncologist's office with him as anal cancer is still considered fairly rare. His oncologist may never have treated it before. If at all possible, bundle your friend off to a major medical ceneter with known expertise in cancer treatment.

    The NCCN recommends participation in clinical trials (see page 3 of the protocol PDF). Chemotherapy and radiation will still be used in the trials in the US, but the investigations may be looking at different types of radiation, the total radiation dose, or look at different chemo medication combinations or doses. Find clinical trials at these sites:
    * The NCCN "Find a Clinical Trial" (I think you have to log in first) - http://www.nccn.org/patients/resources/clinical_trials/find_trials.aspx
    * The American Cancer Society - look at the left-hand column on this page "Clinical Trials Finder" and "Rides to Treatment".
    * The National Cancer Institute (part of the National Institutes of Health) - http://www.cancer.gov/clinicaltrials
    * Dysplasia Clinic (University of California at San Francisco) - http://www.ucsfhealth.org/clinical_trials/

    [When I joined this forum a few months ago, I read about one member who took an alternative treatment as part of a Chinese clinical trial, but don't remember the details (immunotherapy, maybe?). I know that he had to go to China for some months in order to receive it.]

    For more information on anal cancer, see these sites, among others:
    * The American Cancer Society "Anal Cancer" - http://www.cancer.org/cancer/analcancer/index
    * Anal Cancer Help: by anal cancer patients for anal cancer patients and caretakers with lots of practical information - http://www.analcancerhelp.info/
    * The HPV and Anal Cancer Foundation: edicational website as well as help with financial resources in the US and UK - http://www.analcancerfoundation.org/
    * The National Cancer Institute "Anal Cancer" - http://www.cancer.gov/cancertopics/types/anal
    - You might want to print out the following books as your friend may be referring to them often:
    - "Radiation Therapy and You: Support for People With Cancer" online book - http://www.cancer.gov/cancertopics/coping/radiation-therapy-and-you
    - "Chemotherapy and You: Support for People With Cancer" online book - http://www.cancer.gov/cancertopics/coping/chemotherapy-and-you
    * The Farrah Fawcett Foundation: "Farrah Fawcett Patient Assitance Funds" is one of the organization's services (advanced anal cancer took Fawcett's life) - http://www.thefarrahfawcettfoundation.org/
    * Dysplasia Clinic: a lot of educational articles; strong emphasis on gay and HIV positive patients (University of California at San Francisco) - http://www.ucsfhealth.org/clinical_trials/

    I hope this information is helpful for your friend.

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