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Stage 4 Anal Melanoma- Help/ Advice?

4 Posts | Page(s): 1 

Stage 4 Anal Melanoma- Help/ Advice?

by Jess141 on Tue Mar 06, 2018 03:17 AM

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Hello, My mom was diagnosed with mucosal anal melanoma last July 2017 at 49 after having a hemorroid surgery. It was initially 2 tumors near the rectum. We have been going to Memorial Sloan Kettering for treatment...

First they did immunotheraphy which had bad side effects on my mom, inflamming her organs and causing her to go on steroids for almost 4 months. During this time she also had radiation treatments which had to stop early 16/20 treatments due to 3rd degree burns. She developed several new tumors in the groin region as well as by her kidneys (Oct/Nov). Then in Dec. 2017 a new scan showed further spread to her neck. They started TVEC local shots to the tumors near the skin surface- neck, and 2 near the anus.

She wents through 3 shot cycles and experienced greater stomach pain following the 2nd and 3rd injections. They agreed to do a scan in early Feb. 2018 and saw multiple new tumors- including one in her stomach 7x5cm; the most concerning as she has constant pain, and no desire to eat/drink.

They have now put her on aggressive chemo and have told her due to her current state she is not eligble for any clinical trials (though the one they would put her on is similar to the first tried, just using a different blocker). 

She the chemo 2/26/2018, and has only felt worse. She is in constant abdominal/ rectal pain, tired, struggles to eat and drink... only making her weaker and more lathargic. 

They gave her a prognosis of 3-9 months. I know this is a aggressive cancer but her condition has gotten so poor so fast. I am currently looking into holistic options but many require dietary changes that are difficult to implement given her current stomach tumors. I do not know what else to do at this point. I believed at Sloan we would be getting the best treatment options but nothing has worked so far and her condition is only getting worse.

If anyone has any suggestions/ recommendations for treatments/ therapies/ doctors- please share. Thank you.

RE: Stage 4 Anal Melanoma- Help/ Advice?

by camkis on Mon Mar 12, 2018 02:10 PM

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how are things going?  I'm praying for you. 

RE: Stage 4 Anal Melanoma- Help/ Advice?

by Jess141 on Wed Mar 14, 2018 12:43 AM

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Thank you. My mom has had enough of the hospitals so she’s had more motivation to eat/drink though she doesn’t want to- all bruised up from painful IV draws, considering a port since it looks like she’s going to need fluids/blood transfusions regularly. They want her to start radiation on her stomach tumor but I’m nervous about the side effects since the first round of radiation was barbaric in how badly it burned her (I think the immunotherapy lessen her healing ability). Outside of that, not sure if the chemo had any positive effect on her, I think they’ll have to set up a scan but again not sure if she’s go through it again since 1 round has had such a negative impact already. I looked into some alternative treatment doctors but they are so expensive so that really sucks :( idk what treatments would be most beneficial to her, and at $450 a pop for a consult would like to feel reassured I’m not wasting my money.. we’ll see. At least she’s better than she was last week, any days not at the hospital are good.

RE: Stage 4 Anal Melanoma- Help/ Advice?

by Akanksha2712 on Sat Apr 28, 2018 11:30 PM

Quote | Reply

On Mar 06, 2018 3:17 AM Jess141 wrote:

Hello, My mom was diagnosed with mucosal anal melanoma last July 2017 at 49 after having a hemorroid surgery. It was initially 2 tumors near the rectum. We have been going to Memorial Sloan Kettering for treatment...

First they did immunotheraphy which had bad side effects on my mom, inflamming her organs and causing her to go on steroids for almost 4 months. During this time she also had radiation treatments which had to stop early 16/20 treatments due to 3rd degree burns. She developed several new tumors in the groin region as well as by her kidneys (Oct/Nov). Then in Dec. 2017 a new scan showed further spread to her neck. They started TVEC local shots to the tumors near the skin surface- neck, and 2 near the anus.

She wents through 3 shot cycles and experienced greater stomach pain following the 2nd and 3rd injections. They agreed to do a scan in early Feb. 2018 and saw multiple new tumors- including one in her stomach 7x5cm; the most concerning as she has constant pain, and no desire to eat/drink.

They have now put her on aggressive chemo and have told her due to her current state she is not eligble for any clinical trials (though the one they would put her on is similar to the first tried, just using a different blocker). 

She the chemo 2/26/2018, and has only felt worse. She is in constant abdominal/ rectal pain, tired, struggles to eat and drink... only making her weaker and more lathargic. 

They gave her a prognosis of 3-9 months. I know this is a aggressive cancer but her condition has gotten so poor so fast. I am currently looking into holistic options but many require dietary changes that are difficult to implement given her current stomach tumors. I do not know what else to do at this point. I believed at Sloan we would be getting the best treatment options but nothing has worked so far and her condition is only getting worse.

If anyone has any suggestions/ recommendations for treatments/ therapies/ doctors- please share. Thank you.

Hi, My mom was detected with stage 1 anorectal melenoma in aug 2017 and in sept 2017 we got her operated . She has a permanent colostomy In feb 2018, in a regurlar ultrasound we found multiple mets in her liver, and in CECT ALSO IN lungs. Post this, doctor suggested for immunotherapy, we have her 2 cycles but the effects have been worst. She suffered from live haemorrhage right after the first cycle and has been on painkillers like morphin post second cycle, we have decided not to give her this treatment as its making it worse. She has been an active/ working woman , but ever since keytruda was given , she has been on bed . Quality of life is what is important we sometimes give a lot of pain to the patient and make it worse for them. Rightnow I am clulesss as to what should be the next course of action as the deceas is spreading. Ill pray for your mom :) Regards Akanksha
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