Relapsed aggressive NHL - Stage 4

Piyush0702
Piyush0702 Member Posts: 6
in Lymphoma (Hodgkin and Non-Hodgkin) #1

My father was diagnosed with stage 2 aggressive NHL in intenstinal region 4 years back, tumor was so large that it blocked the motion in the intestines, so it was removed by surgery. After that he was subjected to 4 cycles of RCHOP chemotherapy and then the PET/CT scan showed complete remission. He was supposed to be given 6 cycles of RCHOP, but the doctors then discovered that his bone marrow is hypocellular meaning his bone marrow doesn't create the stem cells at par with a normal healthy person.

 

2 months back he complained of severe back and chest pain and after a couple of days he lost sensation and control in his limbs. The scans showed that there was a compression near his spinal cord, which must be hindering with his nervous system and hence removed it by surgery but he didn't gain back the sensory and motor functions in his limbs.

We went for PET/CT scan which showed cancerous mass in various parts of body.

After the biopsy the doctors diagnosed him with stage 4 aggressive NHL, the disease has spread in all the vertebra bones, shoulder bones, both pelvis, right femur and mandible bones. One cycle of 50% RGemOx chemotherapy was given to him a month back but his response hasn't been great. His haemogram numbers has been always been much below the range even after gcsf wbc booster and rumoplastim platelets booster injection (hb around 7, wbc 500 - 3000, platelets 15000  - 40000) and doctors are saying that there is no hope now because if they given 100% dose of the chemotherapy then there are chances of internal bleeding.

 

What should I do?

 

We are Indians and my dad is currently getting treated at Adyar Cancer Institute in Chennai, India. 

Comments

  • po18guy
    po18guy Member Posts: 1,505 Member
    #2
    Sorry to hear this

    A few questions. What is your dad's age and general health? Is his heart OK? Where is he being treated?

  • Piyush0702
    Piyush0702 Member Posts: 6
    edited January 2020 #3
    po18guy said:

    Sorry to hear this

    A few questions. What is your dad's age and general health? Is his heart OK? Where is he being treated?

    His general health is ok.

    His general health is ok. After the 1st chemo he lost his appetite because of fever and nausea for some days which led to fall in the electrolytes level. But once he started having food properly, everything became normal. He is 60 years old. He is being treated at Adyar Cancer Institute, Chennai, India. 

  • po18guy
    po18guy Member Posts: 1,505 Member
    #4
    Well...

    There is a combination sometimes used in the US called TREC. It is Treanda (Bendamustine), Rituxan, Etoposide and Carboplatin. It is aimed at B-Cell Lymphomss, but was used in my case against three simultaneous cancers (PTCL-NOS, AITL MDS) and was miraculously effective, eliminating all traces in only two infusions.

    I do not know if Indian medical practice or law allows the use of drugs "off label" - that is, against diseases for which they are not yet approved. I do not know why the doctors are so concerned about possible bleeding when they know what the lymphoma is doing! To me, that does not make complete sense. 

  • Piyush0702
    Piyush0702 Member Posts: 6
    edited January 2020 #5
    po18guy said:

    Well...

    There is a combination sometimes used in the US called TREC. It is Treanda (Bendamustine), Rituxan, Etoposide and Carboplatin. It is aimed at B-Cell Lymphomss, but was used in my case against three simultaneous cancers (PTCL-NOS, AITL MDS) and was miraculously effective, eliminating all traces in only two infusions.

    I do not know if Indian medical practice or law allows the use of drugs "off label" - that is, against diseases for which they are not yet approved. I do not know why the doctors are so concerned about possible bleeding when they know what the lymphoma is doing! To me, that does not make complete sense. 

    Thanks for this Po. I am

    Thanks for this Po. I am wondering the same about the possible bleeding and certainly going to ask the same to the doctors. 

  • po18guy
    po18guy Member Posts: 1,505 Member
    edited January 2020 #6
    Piyush0702 said:

    Thanks for this Po. I am

    Thanks for this Po. I am wondering the same about the possible bleeding and certainly going to ask the same to the doctors. 

    When his life is hanging in

    When his life is hanging in the balance, I have no idea why they would worry about "possible" bleeding. If it was actual bleeding, that would change the picture.

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