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Thread: NHL Stage 4 - My Story

  1. #1
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    NHL Stage 4 - My Story

    I was admitted for Chest congestion on the 29th of Oct '08. Within a few hours I lost consciousness and the doctors for the next ten days treated me for TB and Jaundice. On the 11th day a biopsy of splenic lesion confirmed that I am suffering from 4th stage NHL. I was administered chemotherapy and the second R-CHOP was given on the 14th day. After two chemos I was discharged and subsequently visited the hospital on the days of the next four chemos.

    After the 6th chemo I underwent a CT Scan which confirmed that there were no cancerous cells on any of the organs.

    I did not experience much of the side effects due to the heavy supplements administered during chemotherapy.

    I used to have some constipation, mouth ulcers and cough. But it wasnt as severe as to what I had heard from other patients.

    It is after the sixth cycle that I have experienced the severest of side effects. Nerves of both palms and feet have become weak and I find difficulty in walking. I have since started on drugs for the same and the condition is improving.

    I had a few questions myself about what I need to do in future. I can answer queries about my experience which can be of help to patients
    who would be going through a similar ordeal.

    Please do ask / answer.

    Best regards,
    Age : 44
    Diffuse Large B cell Lymphoma
    Stage 4
    Finished Six cycles of R Chop 14 - 21st Jan '09
    Officially in remission 9th February 2009
    Remission confirmed 24th April 2009

    http://cancerforums.net/viewtopic.ph...ghlight=#49797

  2. #2
    Newbie Top User joepet's Avatar
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    Hello Badri.

    First off, congratulations! To go from Stage 4 to NED (no evidence of disease) in such a sort time is amazing, and gives me additional hope that my mere Stage 1 will turn out the same.

    I'm not sure if the recovery from R-CHOP 14 is any different from that of R-CHOP 21, but we do have some guys here who can tell you what they experienced in the months after their treatment.

    Just wondering if your hair has started growing back yet? From your sig it seems like it has been close to 3 months since your last treatment, so I imagine that the hair follicles should be recovering soon if they have not already.

    Good luck on a long and relapse free life!
    My Story: http://cancerforums.net/viewtopic.php?t=11396
    Diffuse Large B cell Lymphoma
    Stage 1AE (localized in colon)
    Began six cycles of R chop 21 3rd Dec 2008
    Finished R chop 21 Apr 2009
    Complete remission as of May 2009
    Confirmed April 2010

  3. #3
    Senior User SingleDad's Avatar
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    Wow congrats - Stage IV and very ill to NED.

    Congrats...

    I can hope my outcome Stage 2/3 is so good.

    I'm glad you mentioned the cough as part of the side effect - it's been annoying me and wasn't aware it was an effect.

    I had no lung/chest issues from the scan so I was puzzled.

    I'm halfway through second cycle and feeling pretty good.

    I'm assuming from your post that aside from te first two in the hospital the last cycle was the worst.

    My last will be deep into spring/early summer - not a bad time to loaf around in the hammock with a book.

    Anyways congrats.

    Thanks for the wow factor on cure .
    Age 63 DHL Stage 2/3 CHOP+R x 6 >2/26/09 Complete 6/9 2009
    Diary here http://cancerforums.net/viewtopic.php?t=12003
    Officially in remission July 9th 2009 3 rounds of Intrathecal July 29th
    Radiation as a prophylactic measure. 1st Radiation Sept 9 completed Oct 1. 2009
    Cancer free 2012 and having fun http://www.gtamotorcycle.com/vbforum...-second-season 3 more appts to cure declared Sept 2013 - cancer free. Lots of travel photos here https://picasaweb.google.com/home April 2014 cance free and last appointment.

  4. #4
    Newbie Top User joepet's Avatar
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    Hi.

    Just thought I would mention I have a slight cough as well. In fact, it was the reason that my last cycle was delayed a week, as the doctor happened to do a CT for other reasons and found some "clouding" in my lungs that concerned him as possible damage caused by chemo. It got better so I did the last chemo, but the cough has returned. It's not a useful cough in that it doesn't bring up any phlegm or such, just that my chest kind of tickles to the point where a cough comes out.

    Hopefully this goes away again like it did last time...
    My Story: http://cancerforums.net/viewtopic.php?t=11396
    Diffuse Large B cell Lymphoma
    Stage 1AE (localized in colon)
    Began six cycles of R chop 21 3rd Dec 2008
    Finished R chop 21 Apr 2009
    Complete remission as of May 2009
    Confirmed April 2010

  5. #5
    Senior User SingleDad's Avatar
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    Exactly...almost like an allergy cough ( I am mildly dust allergic )
    It only got bad once...would not settle.

    I wonder if it's related to dry mouth.
    Age 63 DHL Stage 2/3 CHOP+R x 6 >2/26/09 Complete 6/9 2009
    Diary here http://cancerforums.net/viewtopic.php?t=12003
    Officially in remission July 9th 2009 3 rounds of Intrathecal July 29th
    Radiation as a prophylactic measure. 1st Radiation Sept 9 completed Oct 1. 2009
    Cancer free 2012 and having fun http://www.gtamotorcycle.com/vbforum...-second-season 3 more appts to cure declared Sept 2013 - cancer free. Lots of travel photos here https://picasaweb.google.com/home April 2014 cance free and last appointment.

  6. #6
    Newbie Top User joepet's Avatar
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    I don't think mine is related to dry mouth because it clearly showed up as a cloudy outline in my lungs during the March CT, in stark contrast to the clearness of the previous October CT.

    I thought it was a result of me catching my kid's cold, but now that it's happening again I'm thinking that perhaps it is something chemo related after all.
    My Story: http://cancerforums.net/viewtopic.php?t=11396
    Diffuse Large B cell Lymphoma
    Stage 1AE (localized in colon)
    Began six cycles of R chop 21 3rd Dec 2008
    Finished R chop 21 Apr 2009
    Complete remission as of May 2009
    Confirmed April 2010

  7. #7
    Senior User SingleDad's Avatar
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    Well my understanding is mucuous membranes shed cells - it could be happening in the throat.
    Age 63 DHL Stage 2/3 CHOP+R x 6 >2/26/09 Complete 6/9 2009
    Diary here http://cancerforums.net/viewtopic.php?t=12003
    Officially in remission July 9th 2009 3 rounds of Intrathecal July 29th
    Radiation as a prophylactic measure. 1st Radiation Sept 9 completed Oct 1. 2009
    Cancer free 2012 and having fun http://www.gtamotorcycle.com/vbforum...-second-season 3 more appts to cure declared Sept 2013 - cancer free. Lots of travel photos here https://picasaweb.google.com/home April 2014 cance free and last appointment.

  8. #8
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    Re: NHL Stage 4 - My Story

    Thanks Joepet, Singledad for your warm notes.

    About the cough I suffered for almost a month. I used to cough in the mornings. Most of the days the coughing used to stop by afternoon or early evening.

    I had started with clouded lungs in the first place. My tracheostomy wound on healing may have reduced the tracheal air passage.

    After trying different drugs prescribed by my Chest specialist. I turned to Ayurveda and got instant relief.

    I am meeting my oncologist today to learn about the mediciation he has planned for the future. And in a weeks time I would be starting on Ayurvedic medicines which are very good in controlling cancer and in many cases have cured patients who have refused to go in for Radiation / Chemotherapy. They opt for this when the oncologist refuse to take up their case or find the cost of treatment expensive. In India the patient has to bear the cost of treatment and treatment of cancer is a costly affair.

    About my hair, yes it has started growing back and I need to shave my beard almost every three days.

    Hair started growing a month after my last cycle.
    Age : 44
    Diffuse Large B cell Lymphoma
    Stage 4
    Finished Six cycles of R Chop 14 - 21st Jan '09
    Officially in remission 9th February 2009
    Remission confirmed 24th April 2009

    http://cancerforums.net/viewtopic.ph...ghlight=#49797

  9. #9
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    Hi All,

    Wanted to add that last week I have joined PRELUDE a clinical trial of Enzastaurin Drug that would be the first to prevent relapse in Lymphoma.

    My Oncologist suggested that I join the Clinical Trial Study as he felt that I would be closely monitored which is a big advantage for somebody with Lymphoma.

    I would suggest that you may check if your city is in the study map and join as soon as possible.
    Age : 44
    Diffuse Large B cell Lymphoma
    Stage 4
    Finished Six cycles of R Chop 14 - 21st Jan '09
    Officially in remission 9th February 2009
    Remission confirmed 24th April 2009

    http://cancerforums.net/viewtopic.ph...ghlight=#49797

  10. #10
    Hi Badri,

    Thanks for sharing the information. I am writing to ask you a favor. My uncle is suffering with Diffuse Large B cell Lymphoma and will undergo R Chop 24th of this month at Care Banjara hills Hyderabad. It would be great if you share telephone number.

    Thanks
    Ahsan
    9704123126

  11. #11
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    Dear Ahsan,

    Sorry, could not write to you. I have become quite busy and almost leading a normal life. Travelling quite a lot and hence not keeping in touch with Cancerforums.

    I work very close to Care Banjara. You can reach me on 98662 36330. I will try to call you.

    Regards,

    Badri
    Age : 44
    Diffuse Large B cell Lymphoma
    Stage 4
    Finished Six cycles of R Chop 14 - 21st Jan '09
    Officially in remission 9th February 2009
    Remission confirmed 24th April 2009

    http://cancerforums.net/viewtopic.ph...ghlight=#49797

  12. #12
    Newbie Top User joepet's Avatar
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    Always great to hear from you Badri, as your story serves as an inspiration to everyone here. Keep on living that normal life!
    My Story: http://cancerforums.net/viewtopic.php?t=11396
    Diffuse Large B cell Lymphoma
    Stage 1AE (localized in colon)
    Began six cycles of R chop 21 3rd Dec 2008
    Finished R chop 21 Apr 2009
    Complete remission as of May 2009
    Confirmed April 2010

  13. #13
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    Smile

    Thanks Joepet, I had the three monthly CT Scan and the results including the Blood reports are all good.

    Health wise doing great, putting on weight each day. There are some small issue related to AMSN (Axonal Motor Sensory Neuropathy). Due to chemo my bones have become weak and I legs pain due to this.

    I would start a thread to know what other long term side effects one needs to be prepared for.

    All the best and thanks for all the support that you, Chemo, Brainman and others provide to all the co-travellers in the long journey. (Sorry if I have missed names of some of you who are doing a great service by being there for those in need).

    Cheers !!!!

    Badri



    Quote Originally Posted by joepet View Post
    Always great to hear from you Badri, as your story serves as an inspiration to everyone here. Keep on living that normal life!
    Age : 44
    Diffuse Large B cell Lymphoma
    Stage 4
    Finished Six cycles of R Chop 14 - 21st Jan '09
    Officially in remission 9th February 2009
    Remission confirmed 24th April 2009

    http://cancerforums.net/viewtopic.ph...ghlight=#49797

 
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