Not treating melanoma at all…

This topic has 22 replies, 8 voices, and was last updated 4 years, 7 months ago by it0m55.

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- September 25, 2019 at 7:00 pm
- Quote
it0m55
Participant
I guess foolish is the first thing that comes to mind when choosing no treatment at all after my 1.9 biopsy on my left arm…

…does anyone know of anybody that has tried it… or of any statistics… I can’t find info at all… and yes after 9 mos. I realize it’s a dangerous choice…

Thanks,
Tom

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Replies

- - September 25, 2019 at 7:31 pm
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  mandyjill
  Participant
  There is a lot of info. you are leaving out. What phase are you? What has your doctor recommended? If you have metastatic tumors, they are not going away. There are so many good treatments out there these days.
  - September 25, 2019 at 7:58 pm
    
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    it0m55
    Participant
    
    Not officially “Phased” at this point (without SLNB)…
    but was staged at 2a after initial 1.9 biopsy (9 mos. ago).
    Carried lesion on arm for 2 years prior to that.
    
    My Dr. has recommended standard procedures… I was
    just wonderering if anyone has gone without treatment,
    or knows of anyone, and, what happened… Thanks.
  - September 25, 2019 at 8:06 pm
    
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    JudiAU
    Participant
    
    Well if you have advanced melanoma and you don’t treat it the melanoma spreads further. You start to feel symptoms from the spread of tumors. Unpleasant symptoms. Unchecked melanoma acts quickly. And if you continue not to treat it, I assume you die.
    
    Why not have the SLNB to give yourself options and information. This is obviously on your mind.
  - September 25, 2019 at 8:17 pm
    
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    it0m55
    Participant
    
    Thanks for caring : ).
  - September 26, 2019 at 4:02 am
    
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    JudiAU
    Participant
    
    We do. We know. When I had my 2B melanoma, did all the jazz while I had a nursing toddler and kids 6,8. Stage IV melanoma had a 5% 5 year survival rate at the time. I had a very very hard time processing. But my myth nodes were clear, passed 2 years of CT and then an X-ray. I felt okay then. Maybe I would live. Then I had unrelated serious issue and they picked up the melanoma to check the stability of my unrelated brain tumor. It is hard. My youngest is 6. Most of his life I’ve been scary sick but if you walked by me on the street you wouldn’t know. Sometimes treatments are hard. I already have a lot of side effects. It was super hard and unfair to plunge into another battle. When I started the battle I didn’t expect to see my youngest start Kindergarten. It is just one day at a time.
  - September 26, 2019 at 3:59 pm
    
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    it0m55
    Participant
    
    Thank you and God Bless : )
- - September 25, 2019 at 9:06 pm
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  tedtell1
  Participant
  Anon;
  There are many reasons for choosing to not move forward/research treatment. Fear, anxiety, rumors and misinformation, even mistrust. One or all of these reasons may play in to your reasoning but the important thing is you are here and asking us. Most of us have either been through it or are the spouse or loved one of someone going through it. We get it! Please carefully consider at least a WLE and listen to the responses of all the smart people here. Realize that the Mel monster is a vicious beast and treats many people in different ways. Some might be successful with no treatment…but is your life something you are willing to gamble with? God bless and know that we are behind you and hoping that this beast does not come back for you!
  Ted
  - September 25, 2019 at 9:39 pm
    
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    it0m55
    Participant
    
    Hi Ted,
    
    Fairly sure the beast never left me and has metastasized… if so, would you recommend that immunotherapy compared to surgery, chemo, etc… ?
    
    I haven’t decided against treatment… I just wondered how bad the dying symptoms are compared to the treatment anguishes I’ve read about in these forums.
    
    Thanks,
    Tom
  - September 26, 2019 at 11:14 am
    
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    tedtell1
    Participant
    
    Tom,
    I wish I could say that I know for sure that treatment would be easy. For some who have gone through treatments, it is pretty easy especially immunotherapies versus chemotherapy. Some experience fatigue and aching of the joint but nothing else. I went through treatment with Nivo and continued to work my teaching job full time with an occasional day off for rest. Some have surgeries, radiation and multiple therapies. I think it would be good for you to take the next step and get a clear picture of what if any progression you have had then research the recommended therapies from there. Hope this helps! God bless and take care. (PS., I hope you are including your loved ones in your discussion and thoughts about this. It helps for them to know where you are at, if you don’t have a great support network, you have come to the right place) Also, thanks for taking the Anon off your post. People tend to respond more actively to someone who uses a name, even if it doesn’t identify you. We have alot of anonymous posters and it is hard to tell them apart! TT
  - September 26, 2019 at 4:09 pm
    
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    it0m55
    Participant
    
    Thanks Ted.
- - September 25, 2019 at 10:08 pm
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  Bubbles
  Participant
  Many, many, many folks went without treatment for melanoma prior to 2011 when current treatments became FDA approved. The current treatments were in trials for some in the years preceding allowing access to some.
  
  Here is a report that may interest you: Melanoma survival in the United States, 1992 to 2005 Link here: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4890628/
  
  Here is a pertinent graph –
  
  1992-1995 1996-1998 1999-2001
  N (%) 5-y Survival, % (95% CI) N (%) 5-y Survival, % (95% CI) N (%) 5-y Survival, % (95% CI)
  Overall 16,262 87.7 (87.1-88.2) 14,286 89.1 (88.5-89.6) 15,604 90.1 (89.6-90.5)
  Staged 15,304 (94.1) 88.1 (87.5-88.6) 13,647 (95.5) 88.1 (87.5-88.6) 15,272 (97.9) 90.3 (89.8-90.7)
  Unstaged 958 (5.9) 80.9 (78.2-83.3) 639 (4.5) 80.0 (76.6-83.0) 332 (2.1) 79.6 (74.6-83.7)
  Staged
  Localized 13,223 (86.4) 94.3 (93.8-94.6) 11,726 (85.9) 95.6 (95.2-96.0) 12,922 (84.6) 96.4 (96.1-96.7)
  Regional 1518 (9.9) 59.4 (56.8-62.0) 1468 (10.8) 61.3 (56.8-63.8) 1869 (12.2) 65.5 (63.2-67.7)
  Distant 563 (3.7) 14.0 (11.1-17.2) 453 (3.3) 16.4 (13.0-20.2) 481 (3.2) 16.6 (13.0-20.2)
  
  TODAY, as in 2019, data from SEER data (link here: https://www.cancer.org/cancer/melanoma-skin-cancer/detection-diagnosis-staging/survival-rates-for-melanoma-skin-cancer-by-stage.html )
  “Five-year survival rates for regional and distant stage melanomas are 64 percent and 23 percent, respectively.”
  
  And when you break melanoma 5 year survival rates down even further – to those who are KNOWN to have attained treatment even thought they were Stage III or IV –
  A 2019 report on those who were given targeted therapy gleaned “…overall survival rates were 37% (33 to 42) at 4 years and 34% (30 to 38) at 5 years.”
  A 2019 ASCO report of those who were given immunotherapy gleaned ” At a median follow-up of 43.1 months in all cohorts (N = 94), the 4- and 4.5-year OS rates were both 57%.” with some patients doing even better depending on other factors. Here is a link for both these reports if you’d like to read them for yourself: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2019/09/melanoma-patients-want-to-know-what-do.html
  
  So….gotta say. The melanoma patients who attained treatment did much better. I wish you my best, Tom.
  
  Celeste (LIVING with melanoma since 2003 when diagnosed as Stage IIIB with NO treatment options. Stage IV with brain and lung mets in 2010. Immunotherapy trial begun in 2010, with last dose in June 2013. NED still…..with no further treatment for melanoma.)
  - September 26, 2019 at 4:06 pm
    
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    it0m55
    Participant
    
    Thanks Celeste… what do you think of “6 months to live 10 years later”?
    
    Tom
  - September 26, 2019 at 5:07 pm
    
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    Bubbles
    Participant
    
    I think I am an incredibly lucky bug to have gained access to immunotherapy at a time when I was in a downward spiral due to melanoma and many others were still unable to attain needed treatment. I wish you my “lucky bug” status. c
  - September 26, 2019 at 5:24 pm
    
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    Bubbles
    Participant
    
    Perhaps, as you ponder your future, this may bring a smile: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/09/lucky-bugs.html
    c
  - September 26, 2019 at 6:50 pm
    
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    it0m55
    Participant
    
    You are definitely an amazing person… very inspiring… Thanks C.
- - September 26, 2019 at 1:47 am
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  lkb
  Participant
  Tom, are you seeing a melanoma specialist? S/he should have stats (though Celeste posted some here-hooray, Celeste!) and can be a reliable resource for weighing the risks and benefits of treatment. Wishing you all the best.
- - September 26, 2019 at 4:20 am
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  Johnjk04
  Participant
  My opinion : you are so wrong to pass up on treatments with a qualified melanoma oncologist. The treatments today are saving so many lives. The only way it works, is if you feel there is no value to your life. Then I suggest a psychologist on top of the oncologist.
  - September 26, 2019 at 4:16 pm
    
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    it0m55
    Participant
    
    Thanks for your opinion John… think it would of had more punch without the psychologist recommendation.
- - September 27, 2019 at 3:06 pm
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  it0m55
  Participant
  Thank God this site is here… just like to Thank everyone here for taking the time to say something to me… as a result I’m going to proceed with treatment.
  
  Gratefully,
  Tom
  - September 27, 2019 at 9:32 pm
    
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    JudiAU
    Participant
    
    Live long and prosper Tom.
- - September 29, 2019 at 1:44 am
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  MelanomaMike
  Participant
  Sorry Tom, late to your post, i wouldnt wait to long if youve either already bern diagnosed or you “think” you have Melanoma, i had just about 7 years of NOT seeing a derm doc after noticing a mole that slowly changed in size, color then appearence, when it grew up & out of my skin like a wart, it was already to late, i was staged at 3b and it metastasized to groins lymphnodes and eventually its cells spread through out my leg….read my bio, youll see…
  - September 29, 2019 at 6:51 pm
    
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    it0m55
    Participant
    
    Thanks Mike.