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Thread: Subcutaneous panniculitis-like T-cell cutaneous lymphoma

  1. #1
    Newbie New User
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    May 2011

    Subcutaneous panniculitis-like T-cell cutaneous lymphoma

    Dear All,
    I just learned that my son has cancer on May 3, it is Subcutaneous panniculitis-like T-cell cutaneous lymphoma.

    I am very worry for my son and search online and I found this forum. He is 21 in college. I feel numb and worry. He will see the oncologist on May 10th.
    What question should I ask during visit ? Please help me.

    Thank you so much.

  2. #2
    Top User shakifan's Avatar
    Join Date
    Feb 2011
    Phoenix, AZ
    Hi Worry Mom,

    I just looked up Subcutaneous Panniculitis Like T-Cell and it is a subtype of Peripheral T-cell lymphoma, the type that I have. There are a couple of us on this board with t-cell. I believe that is the type that "Mr. T" had originally, and then I think his become more of a widespread T-cell lymphoma. You can search for a video with Mr. T talking about his lymphoma treatment (I don't know the link), and he has been able to beat it since 1995.

    I am not sure what the treatment will be, but please, please stay off of the internet (except for here!) Do not look up prognosis or anything like that because the information on t-cell is old, there isn't much of it, and it might scare you. Your oncologist will fill you in on the latest treatments, no need to scare yourself unnecessarily like I did!

    There is a lovely woman from Australia, Didee, that is on this board. She too had T-cell and is currently in remission! In fact, she may be a few days checking in because I think she's doing a bit of traveling to celebrate!

    Anyway, PM me if you have other questions and maybe you could get your son on this board?
    43 years old
    Peripheral T-Cell Lymphoma, NOS 4B 4/21/2011
    CHOP-21 to begin 4/26/2011 6-8 cycles
    ICE X 2, auto SCT 12/6/11

    "Y un dia despues de la tormenta, cuando menos piensas sale el sol"-Shakira
    "One day after the storm, when you least expect it the sun will come out."

  3. #3
    Administrator Top User ChemoMan's Avatar
    Join Date
    Jun 2008
    South Australia
    Blog Entries
    Quote Originally Posted by Worry Mom View Post
    Dear All,
    I just learned that my son has cancer on May 3, it is Subcutaneous panniculitis-like T-cell cutaneous lymphoma.

    I am very worry for my son and search online and I found this forum. He is 21 in college. I feel numb and worry. He will see the oncologist on May 10th.
    What question should I ask during visit ? Please help me.

    Thank you so much.
    I know this is a shock to you, having a diagnosis of cancer for your Son. You need to take a deep breath and relax as your Son is going to get through this. The treatment of blood cancers has come a long way and they are now some of the most treatable of all the cancers and the complete remission rates are very impressive.

    We have a number of people with T cell lymphoma's here. You have already met shaki who has just started her treatment and you will soon meet the others. I think you will find that the are very brave and understanding, and they will be able to help you relax about this.

    RE any questions, if you do have anything to ask try writing it down on paper first as you will find you will forget them when you are with the doctor.

    Once again try not to worry too much, chances are your Son will be giving the eulogy at your funeral We are all in the same boat as your Son, but we have all pulled through, if we can do it then your Son can too.

    Good Luck and keep us posted if you feel up to it.
    Age 60
    Diffuse Large B cell Lymphoma
    Stage 2a
    Finished six cycles of R chop 21 26th May 2008
    Officially in remission 9th July 2008
    Remission reconfirmed 1st October 2008
    Remission reconfirmed 17th June 2009
    Remission reconfirmed 7th June 2010
    Remission reconfirmed 6th July 2011

    NED AND DECLARED CURED on the 2/01/2013

    No more scheduled visits to the Prof

    RULE NUMBER 1.....Don't Panic
    RULE NUMBER 2..... Don't forget rule Number 1

    Great moments often catch us unaware-beautifully wrapped in what others may consider a small one.

    I may not have gone where I intended to go,
    but I think I have ended up where I needed to be.

  4. #4
    Senior User susan92084's Avatar
    Join Date
    Jul 2010
    t-cell lymphoma sucks but they are coming up with new treatments for it every day. the treatments suck too but it helps to have someone to talk to thats been there heck i'm with my husband who is getting chemo as i am typing.
    -25 married to josh who is the one with cancer. he is 26
    -diagnosed may 12th 2010
    - extranodal nk/ t-cell lymphoma nasal type
    -after 6 weeks of radation it spreed from stage 2 to stage 4
    -4 rounds of smile chemo therapy later it was in remission
    - dec 19th 2010 allogenic bone marrow transplant
    -january relapse
    - long story short docs are confused as to why he is still alive
    -started a new chemo folotyn (pralatrexate injection)

  5. #5
    Administrator Top User Didee's Avatar
    Join Date
    Jun 2010
    NSW Australia
    Hello. I am so sorry that you have had to join us. Honestly, I think the VERY worst thing is having a child (any age, mine are 30 and 26) diagnosed with a serious disease. We as parents want to be able to take it away and have it ourselves so that we can make it all right. (one of my son's lives on massive pain meds with a bad back. Nothing at all compared to a cancer diagnosis but still a situation as a parent that I wish so much I could take for him)

    Don't panic. Stay off the internet. As Shaki said the statistics and prognosis stuff there is outdated and skewed and you WILL scare yourself silly.
    T cell cancers are a rare type compared with B cell. Only about 10% of lymphoma diagnosis' are T cell.
    Our treatment protocols largely follow what the B cell do.

    We are here for you any time you need us, want to vent or update us.
    I am living proof that There is life after T cell lymphoma. I am a year now in remission.

    How I wish there was a magic wand that we could wave and all cancers and other serious diseases could be erased from the world.
    Aussie, age 61
    1987 CIN 111. Cervix lasered, no further problems.

    Years of pain, bleeding, women's plumbing problems. TV ultrasound, tests, eventual hysterectomy 2007, fibroids in lining of Uterus.

    Dx Peripheral T Cell Lymphoma stage 2B bulky, aggressive Dec/09.
    6 chop14 and Neulasta.
    Clean PET April/10, 18 rads 36gy mop up. All done May 2010
    Iffy scan Nov. 2011. Scan Feb 2012 .still in remission.Still NED Nov 2012.
    Discharged Nov 2014.

    May/2012. U/sound, thyroid scan, FNB. Benign adenoma.

    Relapse Apr 2016. AITL. Some chemos then on to allo transplant. Onc says long remission was good. Still very fixable.

    SCT Aug 2016

  6. #6
    Newbie New User
    Join Date
    May 2011
    Hi Every one,
    Hi Didee,
    "How I wish there was a magic wand that we could wave and all cancers and other serious diseases could be erased from the world. " This is my wish too.

    Thank you so much for your replies. My English is not very good, specially with medical terms, it take me long time to write a litter bit. I know that my son is not doing well now, his lumps get bigger and he is very tired, doctors still waiting for the biopsy to find out what is the sub-type of the lymphoma. I feel so helpless to see my child goes through this.

    I have question if anyone in here have use the alternative treatment like Aloe vera and Papaya leave, I found in here.
    http://www.huldaclarkzappers.com/php2/papayaleaf.php please let me know if these treatment will work . THANKS!

  7. #7
    Newbie New User
    Join Date
    May 2011
    Hello Everyone,
    Here is an updated for my son:
    In May, we were waiting to hear the final pathology report from the National Cancer Institute, because the local hospital couldn't find the sub-type of the lymphoma.
    While we were waiting, my son was so tired everyday, and very emotional, easy to get upset. we talked, we cried, we felt so numb, the air in our family was so difficult to breath... we do not know what is the correct words to use during that time. Sometime we couldn't say anything at all just tear down...
    Every moring I saw his lumps on his face grew bigger and tender, he changed his shape on the face, his smiles look so different because his face was swollen so big. OMG we need to do something, couldn't just seat there waiting for the final result from the NCI. A worrymom turned into a crazymom.
    We told his oncologist about our concern, and he said that he was worry too, the lumps were so aggressive, so he stared the treatment for my son on May 27th, my son stayed in the hospital for 5 days ESHAP -round 1, he went home and got infection after 8hrs, we took him back to the ER, then he had to stay in the hospital for 4 more days. After the first round, his lost his hair and his weight (10 pounds), but the lumps looked smaller and softer. The chemo has knocked down my son and knocked out his tumors.
    On June 17, he had the second round chemotherapy for 6days in hospital, this time they kept him in the hospital one extra day, because of the infection he had on the first round. He did very well on the second round.
    We are doing much better, the health care in the oncology team is very exellence, they do an extremly good job. They provided us the health nutrition, who helped us what to cook for the cancer patient, they also provided us the social work, so we talked about our concerns, the discussion help patient and caregiver/family understand each other more.
    My son will have the third round chemo soon, it will be all four treatments then they will do the PET scan to restage the level. Now I do not seen any lumps on his face, he looks very normal and happy like before he has cancer,the only different is no-hair. It was so unlucky that my son has to go through this, but he is lucky to meet the good oncologist, who is specialize study on the t-cell lymphoma. He said he will present my son case to the International Study , because this is very rare cancer that my son has, it will be a good source for the future studies.

    The third chemo will come soon, please wish my son a lot of luck on the process of treating his cancer. We will be very strong to swim together through this.
    I will be happy to answer any question about this treatment.

    Best wishes,
    Worry Mom

  8. #8
    Senior User jmarek's Avatar
    Join Date
    Apr 2011
    South Milwaukee, Wisconsin
    Hi Worry Mom,

    That is great news, I am glad that you both are finally making it through the waiting and getting through the treatments with great progress.
    His story should provide encouragement to anyone going through the same thing. I wish him the best of luck on chemo #3 and pray that you both get through this well.
    Age 40
    Stage 4 Non-Hodgkin s Large B Cell Lymphoma
    Diagnosed on March 30th 2011/Staged on April 6th

    R-CHOP treatments
    First treatment: April 12th
    Eighth treatment: September 8th
    Have been in Remission since 9/2011

    "Yesterday is history, tomorrow is a mystery, and today is a gift, that's why its called the present"
    Dr. Wayne Dyer

  9. #9
    Administrator Top User Kermica's Avatar
    Join Date
    Jul 2009
    New York
    Hi Worry Mom and thank you for the good news regarding your son. It is good for all of us here to learn of good reports, good treatments and good progress so thank you again. You are right that your soon is lucky to have a good oncologist who is specializing in the T-cell form of lymphoma, I am sure that made a big difference.

    He is also very lucky to have a Mom like you who made sure he got into treatment with the right kind of doctor when the big clinic was moving too slow. You have ben instrumental in making sure your son got the care he needed and I am certain that you have also been instrumental in making sure that he got the love and caring he needed to make his journey as easy as possible. It is so important for cancer patients to have a supportive and caring network of people around them as they go through their treatments and you have done an outstanding job of providing that care and support when it was needed most. I know that is part of what being part of a loving family is all about but there are many times it doesn't happen that way so thank you for your good example and continued good fortune to your son.

    Good health,

    When the world says, "Give up," Hope whispers, "Try it one more time."
    ~Author Unknown

    Age 66
    Follicular lymphoma diagnosed August 08, Stage 1
    2 cycles (20 treatments each) localized radiation to tumor sites. Remission confirmed July 09
    Restaged to Stage 3 May 2010
    Recurrence confirmed May 2010 - Watch and Wait commenced - multiple scans with minimal progression.
    Cutaneous Squamous Cell Carcinoma diagnosed September 2012. Mohs surgical excision 09/2012. Successful, clean edges all around.
    Significant progression detected in PET scan - December 2012
    Biopsy to check for transformation 1/18/2013 - negative for that but full of lymphoma, of course.
    July 2013 - Rescan due to progression shows one tumor (among many) very suspect for transformation, another biopsy 8/12/13.
    August 2013 - No evidence of transformation, 6 courses of B+R commence 8/29 due to "extensive, systemic disease".
    February 2014 - Diagnostic PET scan states: Negative PET scan. Previous noted hypermetabolic cervical, axillary, iliac and inguinal lymphadenopathy has resolved. Doctor confirms full remission.
    June 2014 - started 2 year maintenance Rituxan, 1 infusion every 3 months. Doctor confirms lump under right arm are "suspicious" for recurrent disease, deferring scans for now.
    February 2015 - Doc and I agreed to stop R maintenance as it is depressing my immune system too much.
    June 2015 - Confirm that the beast is back by physical exam, will scan in August after esophageal issues settle down so we can get a clear view.
    August 2015 - physical exam in error, PET/CT shows no evidence of disease. Remission continues well into second year!
    December 2015 - Cardiologist tells me I have plaque buildup growing at an alarming rate. Stent or bypass down the road but not yet...
    March 2016 - new tumor below the jaw so remission is over. Back to active surveillance until treatment is needed.
    June 2016 - C/T scan indicates presence of multiple lesions in iliac chain.
    August 2016 - PET/CT shows multiple areas of lymphoma as expected plus new areas of concern in bowel.
    January 2017 - C/T scan shows significant progression in cervical and inguinal lymph chains, largest tumor is impacting hearing, measures 2.1x4.6 cm. 4 to 8 cycles of R-CVP, 1x3weeks to commence 2/6/17.
    April 2017 - Mid treatment scan shows about 1/3 reduction in multiple tumors. Also shows abdominal aortic aneurysm with peripheral thrombus. Cardiologist changed meds, spoke of need for surgical repair down the road.
    September 2017 - finished 10 rounds of R-CP, V was stopped due to neuropathy in feet. No further treatment planned at this time, at least 10 tumors can be felt which seem to be growing again.

    December 2017 - Biopsy of external iliax node with SUV of 13.1 shows no transformation! However, the FL grade is now 3A instead of Gr 1-2. Will start indefinite protocol using Copanlisib, one of the new targeted therapies. I remain hopeful.


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