NLPHL with NHL B cell T cell rich relapse

Sandy Ray
Sandy Ray Member Posts: 144 Member
in Lymphoma (Hodgkin and Non-Hodgkin) #1

Well I have looked at the site off and on but have not posted since I received the good news of NED in 2017. Now it is back.  I have NLPHL and NHL B cell T cell rich Lymphoma.

Got the biopsy results Thursday that in fact both types were back. My Dr is at MD Anderson in Houston and he is going to call me next week with recommendation on treatment.

He did indicate that most likely would be Chemo and stem cell transplant. As expected I am a little anxious but just going to see how it goes.

I know there are many on here that have experience in all this so any advice is welcome. The advice I got here last time really helped me through the treatment last time.

Last time I had 6 treatments of RCHOP. 

 

Comments

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,819 Member
    #2
    Connection

    Sandy, your posts relates pretty directly to something I wrote to tgyphilly yesterday (Jan 10) regarding NLPHL relapse tendencies.

    Since your diagnosis is rather complex, it is great that you are going to MD Anderson.    I hope a return to NED happens quickly for you,

    max

  • po18guy
    po18guy Member Posts: 1,509 Member
    #3
    Do not be afraid...

    ...to enter into clinical trials or to try various drugs off-label or in novel combinations. You are at the correct facility and may rest assured that your case is the topic of discssion in the hematology division - a good thing. Personally, this is where three crucial virtues come into play. Whether you are "religious" or not, the three Christian virtues are faith, hope and charity (love). We all have faith in sometihng - self, others, doctor, medical sceince, prayer, God or something very important to us. Without faith in something, we are a rudderless ship, being driven this way and that according to the prevailing winds. Hope: We hope for a good outcome. We do not hope for what we see or possess, but for that which is to come. Hope builds on faith. Charity (love): we enter into treatment as we love life, we love our family and close friends, we love what we perceive as God. A rational and logical progression. If we lack any or all of these three human virtues, we become truly pitiable creatures.

    IME, faith, hope and love make all things possible.

  • Sandy Ray
    Sandy Ray Member Posts: 144 Member
    #4
    Max Former Hodgkins Stage 3 said:

    Connection

    Sandy, your posts relates pretty directly to something I wrote to tgyphilly yesterday (Jan 10) regarding NLPHL relapse tendencies.

    Since your diagnosis is rather complex, it is great that you are going to MD Anderson.    I hope a return to NED happens quickly for you,

    max

    Encouraging

    Max,

    Thanks for the response. I read a lot of your post. Always appreciate your wisdom and the knowledge you have gained over the years. Yes I feel like MD Anderson is the place to be. They are great to work with and encourage me to have treatment locally (Alabama) when it makes sense. Of course if we go the stem cell route I will have it there. Hope to hear something by Tuesday from my Dr at MDA.

  • Sandy Ray
    Sandy Ray Member Posts: 144 Member
    #5
    po18guy said:

    Do not be afraid...

    ...to enter into clinical trials or to try various drugs off-label or in novel combinations. You are at the correct facility and may rest assured that your case is the topic of discssion in the hematology division - a good thing. Personally, this is where three crucial virtues come into play. Whether you are "religious" or not, the three Christian virtues are faith, hope and charity (love). We all have faith in sometihng - self, others, doctor, medical sceince, prayer, God or something very important to us. Without faith in something, we are a rudderless ship, being driven this way and that according to the prevailing winds. Hope: We hope for a good outcome. We do not hope for what we see or possess, but for that which is to come. Hope builds on faith. Charity (love): we enter into treatment as we love life, we love our family and close friends, we love what we perceive as God. A rational and logical progression. If we lack any or all of these three human virtues, we become truly pitiable creatures.

    IME, faith, hope and love make all things possible.

    Faith

    Po,

    I read a lot of your post in 2017 with my first diagnosis. Always made me feel like a wimp for not taking it like a champ. You have been through a lot and keep on keeping on.

    I do have faith in God. I believe it is all in His hands. I just hate the waiting. The RCHOP was tiring but other than that I came out pretty good. Just always get apprehensive about every new procedure or treatment until I have experienced them. So far none of them has been as hard  as I imagined they would be. Even knowing that I always get anxious before each. I also remember just how truly exhausted I was by the last treatment. I cannot say I look forward to that. I guess we do what we have too.

    Anyway thanks for the response.

    Hoping to get a call by Tuesday with the recommendation. Yes my Dr. Said they would be discussing a course of action.

  • tgyphilly
    tgyphilly Member Posts: 49 Member
    #6
    Hoping for the best for you Sandy

    Whatever the protocol recommendation, I wish you all the best in treatment, and a speedy & lasting recovery.  

  • Sandy Ray
    Sandy Ray Member Posts: 144 Member
    #7
    tgyphilly said:

    Hoping for the best for you Sandy

    Whatever the protocol recommendation, I wish you all the best in treatment, and a speedy & lasting recovery.  

    Thanks

    Thanks so much

  • po18guy
    po18guy Member Posts: 1,509 Member
    #8
    Sandy Ray said:

    Faith

    Po,

    I read a lot of your post in 2017 with my first diagnosis. Always made me feel like a wimp for not taking it like a champ. You have been through a lot and keep on keeping on.

    I do have faith in God. I believe it is all in His hands. I just hate the waiting. The RCHOP was tiring but other than that I came out pretty good. Just always get apprehensive about every new procedure or treatment until I have experienced them. So far none of them has been as hard  as I imagined they would be. Even knowing that I always get anxious before each. I also remember just how truly exhausted I was by the last treatment. I cannot say I look forward to that. I guess we do what we have too.

    Anyway thanks for the response.

    Hoping to get a call by Tuesday with the recommendation. Yes my Dr. Said they would be discussing a course of action.

    Words, if not of consolation, of strength

    A certain man named Saul of Tarsus wrote these words almost 2,000 years ago:

    "More than that, we rejoice in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope, and hope does not disappoint us, because God’s love has been poured into our hearts through the Holy Spirit who has been given to us."

    "Patience." Its roots trace way back, and in 14th century French, the meaning was "to (endure) suffering without complaint"

    I don't know about you, but I'm not all that good at patience. Not yet anyway.

    Bottom line: You beat it once. You won Olympic Gold in cancer fighting. You have even more (and more effective) tools at your disposal this time around.

  • ShadyGuy
    ShadyGuy Member Posts: 923 Member
    #9
    Suffering

    Both stress and pain are put upon us by the world and sometimes by our own bodies. They are external to our minds. Suffering is our minds response to pain and stress. Pain is inevitable while suffering is optional. As for Saul of Tarsus, if he ever really existed, he was wise.

  • Sandy Ray
    Sandy Ray Member Posts: 144 Member
    edited January 2020 #10
    Headed to MD Anderson

    Well headed to MD Anderson to start down the road for stem cell transplant. Looks like we will start with Rice. The 6 rounds of RCHOP last time were tiring but not unbearable. Hopefully the RICE and transplant will be bearable as well. One advantage this time is we caught it before I lost 35 pounds and cancer had already wore me down.

    Here we go!

  • tgyphilly
    tgyphilly Member Posts: 49 Member
    #11
    Sandy Ray said:

    Headed to MD Anderson

    Well headed to MD Anderson to start down the road for stem cell transplant. Looks like we will start with Rice. The 6 rounds of RCHOP last time were tiring but not unbearable. Hopefully the RICE and transplant will be bearable as well. One advantage this time is we caught it before I lost 35 pounds and cancer had already wore me down.

    Here we go!

    Good luck

    Hope the meds and process isn't too bad, and you knock the lymphoma out once and for all.  

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,819 Member
    #12
    Sandy Ray said:

    Headed to MD Anderson

    Well headed to MD Anderson to start down the road for stem cell transplant. Looks like we will start with Rice. The 6 rounds of RCHOP last time were tiring but not unbearable. Hopefully the RICE and transplant will be bearable as well. One advantage this time is we caught it before I lost 35 pounds and cancer had already wore me down.

    Here we go!

    R-ICE

    R-ICE is themost common pre-STC regimen.   HARSH, but we must battle on. I hope it is not so bad for you and that complete remission is in your future soon.

  • lindary
    lindary Member Posts: 711 Member
    #13
    Sandy

    Went through chemo in 2015 for follicular lymphoma. First 6 rounds of R-Chop followed by 3 of Rice. I had no problems with the R-Chop. 

    Rice really hit the blood cells. After the second treatment I needed a transfusion. When I went in for the third treatment they had to give me another transfusion. 

    Rice was almost 3 days in the hospital. I took it as a chance to catch up on reading. Afterward I realized I should have also taken walks several times a day. It is not good to sit/lay around that much for 3 days. 

     

  • Sandy Ray
    Sandy Ray Member Posts: 144 Member
    #14
    lindary said:

    Sandy

    Went through chemo in 2015 for follicular lymphoma. First 6 rounds of R-Chop followed by 3 of Rice. I had no problems with the R-Chop. 

    Rice really hit the blood cells. After the second treatment I needed a transfusion. When I went in for the third treatment they had to give me another transfusion. 

    Rice was almost 3 days in the hospital. I took it as a chance to catch up on reading. Afterward I realized I should have also taken walks several times a day. It is not good to sit/lay around that much for 3 days. 

     

    Sitting

    Well thanks for the advice . I will do some more walking. I have been doining about 2 20 minute sessions but think I will add at least 1. I was actually sailing through it but man I hit a wall today.

    I have lost my appetite. Feel just blah and cannot sleep. Because it took so long for Rituxan the first day it is taking 4 days for the Rice. Well almost done with this round.

    One day at a time.

  • illead
    illead Member Posts: 884 Member
    #15
    Hoping for the best

    Thinking of you Sandy Ray, you are in the best place and will get the best care. Hang in there, and my best to your family and caregivers.

    Becky

  • Sandy Ray
    Sandy Ray Member Posts: 144 Member
    #16
    One treatment down

    Well the first round is down.  Back in Alabama and feeling great. Now just have to wait. Next treatment is 2/18 if my counts play nice and I stay Healthy.

    Thanks for all the prayers and encouragement. I think I figured out even though I did not feel seriously nauseous that maybe I was slightly. Took my nausea medicine and felt fine.

    I think that is what the problem was. Otherwise I was starting to feel better anyway and just played a trick on my mind.

  • Sandy Ray
    Sandy Ray Member Posts: 144 Member
    #17
    Picture

    Finally loaded a picture. I am the old man in the picture. My son and daughter and wife. I have a wonderful daughter in law and 2 precious granddaughters.

     

  • lindary
    lindary Member Posts: 711 Member
    #18
    side drugs

    When my borther-in-law was fighting lung cancer about 15 years ago one of the things I read was to start pain meds before the pain started. Ten years later I was diagnosed with lymphoma and remembered that. Plus learned that the rule was applicable to other prevenative drugs. Anti-nausea and the stool softner. The last I learned the hard way.(pun intended.) 

  • catwink22
    catwink22 Member Posts: 281
    #19
    Sandy Ray said:

    One treatment down

    Well the first round is down.  Back in Alabama and feeling great. Now just have to wait. Next treatment is 2/18 if my counts play nice and I stay Healthy.

    Thanks for all the prayers and encouragement. I think I figured out even though I did not feel seriously nauseous that maybe I was slightly. Took my nausea medicine and felt fine.

    I think that is what the problem was. Otherwise I was starting to feel better anyway and just played a trick on my mind.

    You can do it

    Hi Sandy, I had a stem cell transplant in July 2017 at Dana Farber in Boston, MA. Not an easy road as none of this really is, but I made it through & you can too! I had 6 months of Hyper C- VAD treatments with 8 spinal chemos prior to SCT and BEAM at transplant. The quarantine & food retrictions were tough, but went fast. Wish you strength & comfort in your journey. Cat

  • Sandy Ray
    Sandy Ray Member Posts: 144 Member
    #20
    Albumin

    Well we started treatment 2 of Rice. My Albumin was in normal range but on first day it has dropped. This is a first for me. Anyone know what that means?

    i willi speak to the Doctors when he comes by but wondering if anyone here has any insight. Everything going pretty good otherwise.

     

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,819 Member
    #21
    Sandy Ray said:

    Albumin

    Well we started treatment 2 of Rice. My Albumin was in normal range but on first day it has dropped. This is a first for me. Anyone know what that means?

    i willi speak to the Doctors when he comes by but wondering if anyone here has any insight. Everything going pretty good otherwise.

     

    Albumin

    Sandy, albumin is a protein.  Non-normal levels are mostly used to check for liver disease, but it can also indicate digestive problems. Most people on chemo of course will have liver enzymes get out of wack at some point...it is possible that it is chemo-induced.   

    I am unaware of what particular reasons oncologists may follow it.

    max

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