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Merkel Cell Carcinoma

justwhatiwanted
Posts: 12
Joined: Jun 2002

I am looking for anyone else out there who may have a Merkel Cell Carcinoma. I am 26 and will be starting treatment shortly. It would be nice to know that I'm not the only one out there with this... :)

Heather

lauriell
Posts: 1
Joined: Jan 2003

Heather,
My dad was recently diagnosed 12/13/02 with metastatic Merkel Cell Carcinoma. He is still having tests to see if they can find a primary site. The doctors found it in the lymph nodes in his leg.

I am wondering what type of treatment that you have had. We are trying to gather as much information as we can at this point. We are not sure what lies ahead and would like your point of view.

Thanks,
Laurie

jay55
Posts: 1
Joined: Jan 2011

Laurie,
I was diagnosed with metastatic Merkel Cell Carcinoma in April this year, in my upper arm. Like your father they have not located the primary site.

Can you please tell me what has happened since with your father, if they ever located the primary site? I have had chemo & radiation to the arm.

Thanks Jay

shep124
Posts: 7
Joined: Dec 2012

All new to me what are trails how does this work and what does it do for me?

shep124
Posts: 7
Joined: Dec 2012

sound just like me no site found yet and just waiting on ct scan results,,and as soon as that comes in I headed for houston MD Anderson no waiting around for me

Stillalive
Posts: 1
Joined: Jan 2004

Saw your message.. By the date I would think that you would be about through treatment. The chemo made me sick, as it does about everyone. between it and the radiation, I am up and enjoying life and have been for the last 8 months. I guess you are probably ahead of me. write aand let me know how you are.

faithingod
Posts: 3
Joined: Jan 2004

Was anyone diagnosed with Recurrent Merkel Cell and if so what options did you have/take? My 33 year old husband has been told that's what he has. Were going to a specialty hospital this week to weigh out more options. He nor myself are to keen on chemo....

FargoW
Posts: 1
Joined: Feb 2004

Greetings, I am in my fourth year of remission. I had Merkel Cell Carcinoma of the left calf with Metastisis to the left groin lymph nodes. I had aggressive surgery on my calf and excision of the nodes in my groin. It was necessary to have a skin graft at the surgery site. I had four chemo sessions and then physical therapy to work out the kinks. So far I have been without any further cancer and I am thankful. It has been a struggle but it can be successfully treated. Blessings to you. BillF

judiromanini
Posts: 1
Joined: Aug 2005

Hello,
you are not ht eonly one out there with this rare cancer. My mother is battling it right now. The tumor was found under her left arm piut and she did chemo. surgery and radiation. We are in sacramento California. We had a great oncologist.

austin
Posts: 1
Joined: Sep 2002

hi guys, i wrote an earlier desperate message in 2002, when diagnosed with merkel cell cancer. Site was left groin, which was excised. Then six x-3day sessions of cheno about 10 days apart. Not pretty. BUT so today no reoccurance. I also had prostate cancer diagnosed in 2003 and treated by radiation. It's hard to kill a bad bad thing!Thank you Lord, whoever you are...

AuthorUnknown
Posts: 1564
Joined: May 2006

Heather and others with Merkel Cell Cancer.

I hope you are still checking your messages here at ACS.

I have started a Merkel Cell Cancer Group at Google Groups. This is a group dedicated to those that have experienced Merkel Cell Cancer, their family members, or those supporting the care of a patient with MCC.

Please stop by, sign up, and post your experiences with MCC.

* Group name: merkel cell cancer
* Group home page: http://groups.google.com/group/merkelcell
* Group email address merkelcell@googlegroups.com

George
Administrator

Of note: There are no commerical interests at this discussion group. I am a Merkel Cell Cancer patient recently diagnosed and under treatment.

jjsabina
Posts: 2
Joined: Oct 2009

My mother who is 74 was just told she has merkel cell. Now this is a woman who never stayed int the sun, drank or smoked. She starts chemo on Monday. I will let you know how it goes..Good Luck to you.

CindyW7
Posts: 3
Joined: Jun 2010

My husband as well was diagnosed with MCC. He is 61 never drank, or smoked. He was raised in florida though and in his youth, sunscreen did not exist, or at least wasn't generally used. It has spread to his lymph nodes, liver and bones. It started as a small lump on his forearm. I hope your mother is doing well and I would love to know her progression and the treatments that are being used.

kenner
Posts: 2
Joined: Jul 2010

I had a very small lump on leg (at the age of 70) at the knee, long story short, had surgery Aug 14th. to excise the tumor and check the lymph node in groin. Has a blood clot then did 6 weeks of radiation. Have been clear for nearly a year. I have been under the care of the surgeon who I trust and like. There is nothing around here dedicated to
Merkel Cell or much info anywhere. In my limited reaserch I found out that MCC is so rare because it is related to a compromised immune system. I have been healthy all my life, no HIV or anything, but I have had Sarcardosis, Histoplasmosis and MCC, all three which are tied in to that problem and it may be a gene thing.
I don't worry too much about the MCC but the 4 month test are blood test and chest X-rays so you know what that means as that seems to be your husbands situation right now.
Good luck

kenner
Posts: 2
Joined: Jul 2010

I had a very small lump on leg (at the age of 70) at the knee, long story short, had surgery Aug 14th. to excise the tumor and check the lymph node in groin. Has a blood clot then did 6 weeks of radiation. Have been clear for nearly a year. I have been under the care of the surgeon who I trust and like. There is nothing around here dedicated to
Merkel Cell or much info anywhere. In my limited reaserch I found out that MCC is so rare because it is related to a compromised immune system. I have been healthy all my life, no HIV or anything, but I have had Sarcardosis, Histoplasmosis and MCC, all three which are tied in to that problem and it may be a gene thing.
I don't worry too much about the MCC but the 4 month test are blood test and chest X-rays so you know what that means as that seems to be your husbands situation right now.
Good luck

connie c
Posts: 1
Joined: Sep 2010

My dad has MCC on his left forearm. He is 85 years old. The Dr. removed it and bioposy the lymph nodes under his arm. They found cancer cells there. i know this is a rare cancer so I'm looking for a center or doctor that specializes in MCC. The Dr. wants to remove all the lymph nodes under the arm and do radiation. Please let me know where to go.
thanks
connie

janlem
Posts: 1
Joined: Dec 2010

Hi Connie, My dad was just diagnosed with stage 4 MCC. He is 91 years old & otherwise in good health, very active & strong, no one guesses his age. We go to UC Davis cancer center in Sac. CA but haven't seen the oncologist yet because of the hoilidays. His began on his leg 2 years ago was removed and appeared to get it all but now it is in his abdomen. Could you please share with me what has happened with your dad? I hope all is going well.
Thanks, Janet

shep124
Posts: 7
Joined: Dec 2012

just found out the same and have no idea what i am going to go through. Houston tx at MD Anderson hosp. is going to be my first stop it is guant to travel but the best

CraigOz
Posts: 2
Joined: Jan 2014

First time on forum so please excuse if I have posted this in the wrong place. I'm looking for info from anyone who has had treatment for metastatic MCC.

A family member was diagnosed earlier this year, with the primary lesion first mistaken for a BCC, excised by the GP and routine biopsy showed it was in fact an MCC. Initial PET scan showed spead to regional lymph nodes, and Chemo was commensed (carboplatin + etoposide). Chemo failed to stop the spread or provide any significant shrinkage of the nodes, so Radiation tratment was carried out to completion (IIRC ~25 doses). 

A CT in followup to the radiation showed what appeared to be Liver metastases. These were then viewed by 2 sequential ultrasounds which showed that the number of mets was increasing. Largest met is about 3cm. A ultrasound biopsy is scheduled, and upon confirmation of the lesions being MCC mets, it's back to the medical oncologist for another go at chemo.

Has anyone else had 2nd line chemo for MCC? How did it go? What drugs were used? 

Has anyone used any different treatments than chemo/radiation for metastatic MCC? How did it go? What did you do?

 

This has come as quite a shock - from initial excision of an apparently benign lesion to chemo and radiation has all taken place in about 9 months.

I'm grateful for any help.

 

CraigOz
Posts: 2
Joined: Jan 2014

Probably helpful is I mention we are in Australia.

 

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