Curious about the future

gpespinosa
gpespinosa Member Posts: 25
in Lymphoma (Hodgkin and Non-Hodgkin) #1
So as I approach my year anniversary of being diagnosed with Non Hodgkins Diffused Large B Cell, I wonder if I will ever go back to being normal. I have been in remission for about 5 months now, and so far so good. I just have a lot of questions now and I figured who better to ask then my new found friends :) My biggest fear is relapsing or even getting another type of cancer. Has this happened to anyone and if so what was the time frame? I underwent 6 sessions of R-CHOP, and according to the doctors I have a 50/50 chance of having more children, and that is because I am still considered young, 27. As you can see from my photo which was taking about a week before I was diagnosed, I have a wonderful little guy but would love to give him a little brother or sister on day. Also just wondering if anyone has been able to still have child after chemo, especially R-CHOP? To be honest I dont really want to go by what doctors say because I feel they either sugar coat it or in trying to be blunt give incorrect information as they have already several times with me. So yeah, I would really appreciate any feedback and advice from you all, and thanks again for making me feel so comfortable and welcomed as a newbie :)

Gaby

Comments

  • xlconsult
    xlconsult Member Posts: 18
    #2
    My Experience with NHL
    Gaby,
    Glad to note that you are in remission and hope you had a long one. R-CHOP is a std. therapy now for NHL and you could expect a long remission. I had similar problem but did a milder chemo in 2002 (5 cycles of Chlorambucil tablets) on initial diagnosis, but had a short remission (1-1/2 yrs) and then a 6 cycles of same drug gave a remission of 4-1/2 yrs. The last one I had was COP-R by end 2008 followed by a maintenance therapy of R. It is under remission now from 2008. However the maintenance therapy of R was discontinued after a year (4 out of 8 cycles planned for 2 yrs) due to recurring ulcers inside my throat making eating extremely difficult and painful. No medication other than Prednisone (steroid) was working to control the ulcers that gave side effects like high sugar levels etc. I was told that my immune system was affected by probably overdose of R. Several trials were made with other nasty drugs to reduce and stop the steroids for past 1-1/2 years but everything failed till I found a natural replacement of steroids through Google search (a herb called Ashwagandha or Withania Somnifera) to improve immune system. I had a remarkable recovery from 1-1/2 yrs of chronic inflammation inside throat/intestine etc. within 3 months. It is a natural herb and hence is not proprietory - many companies market this as a food supplement. I found that this herb helps in two ways:

    1. Increasing Lymphocytes in the blood (increased from approx. 700 for past several months to around 2800 within a month and is maintained at this level for past 4 months). Also my high ESR levels (indicating inflammation / infection) went down to normal within 3 months.

    2. Relieves a lot of stress and very smooth sleep unlike the allopathic drugs that I had before that gives too drowsy feeling. I stopped the mild anti-depressant drug that I was using before once I started this herb. As this herb is used in Ayurveda (Indian medical system as old as 4000 years), it is proven to have no side effects.

    I wish I had used this herb during/after my 1st chemo in 2002 itself to recover the lost immune system and believe that it would have increased my remission period. I had plotted my blood counts, haemoglobulin etc. in a spreadsheet from 2002 and clearly gives a pattern of slow increase in lymphocytes over the years of remission in contrary to the quick increase once I started using this herb.

    You may consider this if your Lymphocytes recovery is slow after your chemo. If you are interested please do a Google search to find its several properties and availability in your nearest Food supplement shops.

    Good luck.

    Hari
  • jimwins
    jimwins Member Posts: 2,107
    #3
    Supplements / Herbals - Discuss with Doctor
    Hi Gaby,

    Any herbals, supplements etc. you might want to consider - discuss with your doctor
    or pharmacist with specialty in oncology.

    I did a quick look up on Ashwagandha and found the link below
    at Sloan Kettering about it. Just did a quick skim through and there was
    a WARNING about it posibly causing abortion during pregnancy.

    I'm actually curious about it myself truly - perhaps after treatments but will
    discuss with my doctor. Also, I take a general multivitamin and a B Complex
    vitamin (goal was to help with my blood counts as they didn't come up very
    quickly the first time). I discussed with my doctor and she okayed it but warned
    not to take a lot of antioxidants during treatment as it could interfere with
    the chemo.

    Glad you are doing well!
    Hugs
    Jim



    Sloan Kettering Link re: Ashwagandha

    http://www.mskcc.org/mskcc/html/69127.cfm

    Any others who would like to offer experience/recommendations about supplements, etc.,
    I'd be curious.
  • gpespinosa
    gpespinosa Member Posts: 25
    #4
    xlconsult said:

    My Experience with NHL
    Gaby,
    Glad to note that you are in remission and hope you had a long one. R-CHOP is a std. therapy now for NHL and you could expect a long remission. I had similar problem but did a milder chemo in 2002 (5 cycles of Chlorambucil tablets) on initial diagnosis, but had a short remission (1-1/2 yrs) and then a 6 cycles of same drug gave a remission of 4-1/2 yrs. The last one I had was COP-R by end 2008 followed by a maintenance therapy of R. It is under remission now from 2008. However the maintenance therapy of R was discontinued after a year (4 out of 8 cycles planned for 2 yrs) due to recurring ulcers inside my throat making eating extremely difficult and painful. No medication other than Prednisone (steroid) was working to control the ulcers that gave side effects like high sugar levels etc. I was told that my immune system was affected by probably overdose of R. Several trials were made with other nasty drugs to reduce and stop the steroids for past 1-1/2 years but everything failed till I found a natural replacement of steroids through Google search (a herb called Ashwagandha or Withania Somnifera) to improve immune system. I had a remarkable recovery from 1-1/2 yrs of chronic inflammation inside throat/intestine etc. within 3 months. It is a natural herb and hence is not proprietory - many companies market this as a food supplement. I found that this herb helps in two ways:

    1. Increasing Lymphocytes in the blood (increased from approx. 700 for past several months to around 2800 within a month and is maintained at this level for past 4 months). Also my high ESR levels (indicating inflammation / infection) went down to normal within 3 months.

    2. Relieves a lot of stress and very smooth sleep unlike the allopathic drugs that I had before that gives too drowsy feeling. I stopped the mild anti-depressant drug that I was using before once I started this herb. As this herb is used in Ayurveda (Indian medical system as old as 4000 years), it is proven to have no side effects.

    I wish I had used this herb during/after my 1st chemo in 2002 itself to recover the lost immune system and believe that it would have increased my remission period. I had plotted my blood counts, haemoglobulin etc. in a spreadsheet from 2002 and clearly gives a pattern of slow increase in lymphocytes over the years of remission in contrary to the quick increase once I started using this herb.

    You may consider this if your Lymphocytes recovery is slow after your chemo. If you are interested please do a Google search to find its several properties and availability in your nearest Food supplement shops.

    Good luck.

    Hari

    I will look into it
    I did ask my doctor if he recommend I take any type of supplements or anything after my chemo, but he didnt recommend anything. Im actually a little suprised to read that some people are still taking meds even once they are in remission because I wasnt given anything. Im sure it probably varies case by case, but I hope my doctor is giving me the best advise possible. I will double check about supplements and look into the ones you have recommended. Thanks again for your help and advice.

    Gaby
  • xlconsult
    xlconsult Member Posts: 18
    #5
    gpespinosa said:

    I will look into it
    I did ask my doctor if he recommend I take any type of supplements or anything after my chemo, but he didnt recommend anything. Im actually a little suprised to read that some people are still taking meds even once they are in remission because I wasnt given anything. Im sure it probably varies case by case, but I hope my doctor is giving me the best advise possible. I will double check about supplements and look into the ones you have recommended. Thanks again for your help and advice.

    Gaby

    Herbs
    Hi Gaby,
    I too had the problem of doctors not recommending any supplements. Rather I find that they have an allergy or contempt towards herbal medicines. I was cornered into a situation of low immunity and unable to reduce my steroid intake. My oncologist tried different alternative trials with immunosuppressants like Azethioprine, Thalidomide, Immunoglobulin infusion etc. but reduction of steroids below 30 mg/day was impossible. Several times I was forced to use pain killers and local anethetics to eat a little bit of liquidized food. Steroid dosage also caused high sugar levels and needed insulin injection thrice a day.

    Having reached such a situation for more than a year, I did a Google search to find alternative herbs just to replace my synthetic steroid. Information in several websites gave me confidence as the properties of this herb was exactly what I needed to stop the inflammation. With this information I approached an Ayurvedic doctor to confirm that it has no side effects (unless you are pregnant!). My oncologist also gave his blessing, as he has nothing else to suggest to cure my woes. Regular blood tests were/are being made to monitor the effects and within a short time I could see that I am responding to this herb for the first time after more than a year's struggle. At least 15 kgs of my lost weight was recovered within 2 months and steroids and insulin were completely stopped within 3-1/2 months.

    Your case may not be identical, but the reduction in immunity after chemo is a general issue for which this herb may be useful. My Ayurvedic doctor suggests to continue this herb as a supplement, even though my throat ulcer problem is solved now.
    Good luck.
    Hari

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