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Lymphoma of the Skin

Saj's picture
Posts: 2
Joined: Jan 2003

Hi all. I was diagnosed with B-cell indolent NHL in June 2003. I underwent six rounds of CVP last year. I have recently noticed several red spots on my head and got things checked out by a dermotologist. He said that it could be lymphoma of the skin. I'll be going for a biopsy in a couple of weeks. Has anyone out there had this? How was it treated? Any additional information would be great. Thanks in advance!

Posts: 1
Joined: Aug 2003

My son has Cutaneous T-Cell Lymphoma (just diagnosed) From what I know so far it is a very indolent growing cancer and initially shows its ugly head in the skin. It is a type of Lymphatic Cancer...I know there is no cure but treatment options look positive. He began to get red spots on his skin a few years ago and it has taken this long to be diagnosed. Good luck and let me know how you are doing.

Posts: 1
Joined: Aug 2003

Hi, I have cutaneous T-cell Lymphoma, was dx over 2 years ago. We found a small tumor under the skin and had it biopsied. It was dx as t cell lymphoma. I had IV Chemo first, but cancer reappeard 6 months later. Then was given new drug Targretin, that I have taken orally for 2 years, with different dosages. Currently taking 225 mg per day, seems to be my maintenance dose to keep cancer at bay. I am 52 years old. I had colorectal cancer in fall of 1997. What treatments is your family member having for this. I do get red scaly itchy places on my face, but not real bad. Look forward to hearing from you...

Posts: 1
Joined: Mar 2004

Hi, my mother has CTCL, diagnosed about three years ago. She had phototherapy treatments for several months, putting it into remission (she was peeling from head to toe at one point). After about 7 months she began having red itchy spots again, and resumed phototherapy. When she had to stop for awhile because of burning by the UV light, her lymph nodes began to swell (March 2003). She was then diagnosed with Sezary syndrome variant, which is more aggressive. They tried Ontac, which she had an allergic reaction to, then tried Targretin, which worked for about seven months, then Jan. 2004, the cells became resistant to Targretin. She is now trying photopheresis, but it is slow to work and doesn't work for everyone, and the cancer is worsening. I'm afraid her doctor plans to go to standard chemotheraphy in a couple of weeks to slow it. I would appreciate it it anyone knows of anyplace specializing in the treatment of this. She lives in St. Louis, MO. Her doctor has treated about 30 patients with this, though none successfully for very long. My mother is about to turn 68 and had been in very good health.
My husband had colon cancer last year (stage II) and has been diagnosed with the heriditary form (HNPCC).He just had a clear colonoscopy this week, so so far so good. I hope you are doing well with your cancer.

Posts: 1
Joined: May 2005

I've just joined this group so I don't know how up to date things are with the previous submitters. I had sezary syndrome (Stage 4 NHL/CTCL/SS)and probably 97% of my t-cells were malignant. I used all the treatments mentioned, but nothing helped. Given 1 yr prognosis.
In January 2004, I had a "peripheral blood mini-allo stem cell transplant". My youngest brother was a match for me. As of yesterday's visit to the haematologist, I'm in the clear! All of the malignant cells have been destroyed by the transplanted cells from my brother!
I have had GVHD of the stomach, small reaction in mouth, a very bad respiratory infection at the beginning, and two bouts of liver GVHD for which I am still taking prednisone. But I am here, I am feeling mentally great, physically am getting stronger and better and thank all the powers that be for this chance to carry on!
In my opinion, stem cell transplants are going to be the treatment of choice for many cancers. The mini transplant can be tolerated by older individuals as well since the pre-conditioning chemo is not as bad as the full bone marrow transplant. Infections, viruses and germs are ever present dangers because one is immune compromised for a long time but excellent preventative measures can protect one quite well.
Best of luck to everyone dealing with any illness right now. It is one day at a time and each day is a delight to behold. (I have also been depressed, so I'm not all sunshine and roses, by the way).
Keep asking questions, be a squeaky wheel--you are important and deserve every break you can get. Go for it and don't give up or let anyone else tell you to. It's your life.
1997 Dx - Ductal carcinoma in situ L breast-lumpectomy + 30 radiation
1998 Dx CTCL , (first noticed 1988 but no biopsy til '98)
2001 Dx CTCL/SS - TBI, chemo, PUVA, NM, ECP, Targretin, Interferon
Transplant Jan. 16, 2004--it worked.
Age today, 55! ack!!!

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