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DLBCNHL Treatments complete: 6 RCHOP with 4 intrathecal

Bill1958's picture
Bill1958
Posts: 62
Joined: Feb 2018

Hi everybody!  I am here to share my experience and to also ask a few questions.  I have another thread here but hope to keep this one simpler and focused to DLBCNHL and/or related cancer therapies.  

Briefly, I was dx's with stage 4 DLBCNHL after a biopsy of a lesion behind the nose tested positive for DLBCNHL with the 1st symptom being a swelling on the neck behind and below my right ear Feburary 2018.  Did not hurt, no apparent symptoms(except neck lump) and i really felt pretty good.  Symptoms got worse from there:  night sweats, pain in stomach area and general fatigue.

Started RCHOP of 6 cycles 21 days apart with the first 4 treatments including spinal infusion(intrathecal[sic]) in late February 2018.  90 percent remission after 2nd treatment pet and cat scans, 100 percent remission after 4th treatment pet and cat scan.  And this thursday I get my 6th treatment pet and cat scan results and hope and believe these results will be good news too.  This, to me, is really good news for all of us especially my son, daughter, wife and me.  

 

The side effects from the chemo have been tolerable but difficult and scary at times.  I had neutrapena (low WBC) after each cycle and was hospatilized 4 days after 1st treatment.  Was put on neurlasta patch made it through the low WBCC each treatment cycle henceforth.  Lots of nasuea(controlled by pill), constipation(controlled by diet, meds and exercize), lack of hunger(helped by ensure high protein drink and lots of hamburg, eggs, and other foods higher in protein).  Also insomnia(still tough to help or control) and muscle weakness and fatigue.  The hardest one so far has been neuropathy in my hands and feet. My feet are numb mostly on the bottom and my fingers, hands and wrists are numb and my fingers and hands cramp up often.   My doctors and all my research points to it will get better or it won't(50/50 in my mind).  Vit B6 is supposed to help and if pain is present then pain meds help. I walk and work my hands as much as possible and this helps some.  Also my finger nails have white stripes that are horizontal and I have researched several reasons for this and will ask my oncologist this Thursday for more information.

 

Psycholgically I am fine but the lingering worry regardless of the good scan results remains.  One part of me wants to rejoyce and anther part on me is still waiting for the bad news.  This is my case in a nutshell.  I appreciate all the input and support from this site.  I also appreciate any advice on controlling or helping side effects.   I'm 59 years old and looking foward to many more years on this awesome planet.

Evarista
Posts: 261
Joined: May 2017

Hi Bill and welcome back.  So glad to hear that you are through, over, and done with this particular set of hurdles.  As you know, you've a few still to get past, but, one year after finishing (R-EPOCH), I can report that things do get better. White count goes up, ugly toenails grow out, strength comes back, insomnia goes away. Takes time and progress may feel super-gradual, but you should start to see improvement almost weekly.  It may slow down to monthly, but I am still seeing progress even at this point.  Fatigue & neuropathy have taken the longest.  But I hardly notice my feet/hand troubles now, except when my hands curl up using chopsticks.  But life without chopsticks is pretty darn bearable!  When I get serious bouts of hand cramps: 1/4 cup of dill pickle juice (don't laugh...Try it and see if it works for you). My Primary Care doc tells me that I get more excercise than most of his patients my age (69), I just have to keep at it, even when it feels like I can't.

You've been so upbeat throughout, I feel sure that you will continue to do well.  Don't be a stranger!

illead's picture
illead
Posts: 837
Joined: Aug 2012

Hi Bill,  Well, I know you wish you felt better but from what Evarista says, it will just take time.  Hope you are encouraged by that, sounds like your guitar playing is very much still alive and that you have only good times to look forward to.

Hang in there,

Becky 

Bill1958's picture
Bill1958
Posts: 62
Joined: Feb 2018

Thanks folks.  I have been checking this board daily since my treatments started.  All your support is awesome here.  Hope for the best for all!

Scubamom for two's picture
Scubamom for two
Posts: 19
Joined: Apr 2018

Greetings Bill and friends,

Congratulations on your successful battle!  I also was diagnosed with stage IV DLBCL.  I had 6 rounds of DA-R-EPOCH, two rounds of High Dose Methotrexate, and 11 or 12 IT-chemo infusions (Lumbar Punctures) for my treatments.  I just reached my 6 months post-treatment milestone and had my scans and appt last week where they continued to find me in Remission!  Most of the side effects or friendly fire as I try to think of them, have dissapated.  I still struggle most with insomnia and fatigue. I have a mild form of Neuropathy that affects my hands, mostly at night when I am trying to sleep.

I also had the white lines on the fingernails and although I asked and did some research, I never got a clear answer as to why they showed up.  One thread I read suggested that you get one for each round of chemo you have, not sure about that.  As my fingernails grew out, they went away though and now they are normal.  You didn't mention having this minor problem, but both of my big toenails had large areas of bumpy  dead nail and I thought they might fall off.  They did not and instead have almost grown out to a normal state.  Not to be too sexist, but since I am a female it was easy for me to mostly hide them with nail polish.  I did lose one of my littlest toenails, but becasue I had covered it with nail polish, I didn't even notice when it grew back.  

Sorry, I might be rambling too much.  Although I have a good support system, I am struggling with adjusting to and finding a "new normal."  Even though I know people want to help and be supportive, I just don't feel that others can really understand if they haven't been through what we have experienced.  Overall for me, at six-months out, some things are much better and I'm still having some difficulty in some areas.  I do realize that I am lucky that medicine was able to successfully treat the cancer and I want to be happy and appreciate what I have.  Sometimes that is easier said than done though.  I will just keep putting one foot in front of the other and enjoy the times that I feel like dancing!  I wish good health and happy days ahead for you all!   

Bill1958's picture
Bill1958
Posts: 62
Joined: Feb 2018

Thanks scubamom.  Complete remission is what we hoped for and it is what we got.  The days never go by with out some fear of relapse or further cancers.  I have researched my dx and found it to be germinal center dlbcnhl which has a better prognosis than the non germinal dlbcnhl.  But the fears, although less now, still remain.

Tonight I play a 4 hour gig with my band and I will find out where this neuropathy has taken me.  Last gig was tough and I could not play my solos even close to how I have in the past.  Either way, I will remain positive and hope for the best for myself and others in this cancer boat we are floating in.

 

Scubamom for two's picture
Scubamom for two
Posts: 19
Joined: Apr 2018

Greetings Bill,

Mine was also germinal center DLBCL with "occasional cells weakly positive for MYC and BCL2" and "neoplastic cells are positive for BCL6."  So, from what I understand, not considered enough for double or triple hit, but considered a very aggressive High Grade Lymphoma.  Anyway, the important thing is that we made it to remission with the first heavy duty combo treatment line typically prescribed!  My Dr. reminded me that remaining in remission is a cumulative effect and that hitting the two yr. mark isn't a magic time, so each 3 month interval that finds me still with NED is a celebration and should help ease the anxiety about a relapse.  I just took my road bike out for a short ride for the first time in almost two yrs and even though it was about 100 degrees and the air quality was not too good (due to the severe fires we have been experiencing), it still felt good to do it!  I hope your gig went well and that the neuropathy did not slow you down too much!  My husband plays guitar too and used to perform a lot in various groups over the years.  He has quite a collection of guitars at this point.  Yes, I am also rooting for all of us to prevail and not let cancer take anything more from us than it already has!  Stay strong!

Scubamom     

AaronW's picture
AaronW
Posts: 45
Joined: Aug 2010

Congrats Bill! God bless you!

AaronW's picture
AaronW
Posts: 45
Joined: Aug 2010

Today I went over results of PET after 6 horrifying R-CHOPS. I have to go to Stanford again on September 10, but complete remission is prognosis at the moment - there is still a lymph node group near my heart that is being stubborn.

So...praying and hoping for the best and going to live each day to the fullest. Not happy with keeping my port in for now...but I will re-visit that issue after the Stanford visit and CT to take place in about 4 months.

Aaron

ShadyGuy's picture
ShadyGuy
Posts: 400
Joined: Jan 2017

i know what you mean about the port. Not only is it a nuisance physically but also a constant reminder you have cancer. I am so happy for you! Now go out there and live!

Bill1958's picture
Bill1958
Posts: 62
Joined: Feb 2018

Hi Aaron and Shadyguy. DLBC NHL seems to hit evryone in a different way but still with many parellels-thanks for sharing ScubaMom.  Awesome on your 100 % remission Aaron.  I hope everybody is enjoying life as much as possible.  I am thankful that my wife and I both have our state retirement as I don't think I could be a good employee in the physical sense and the work world leaves so little room to adapt to me and my inabilities.  Now my band, on the other hand, is awesomely adaptable to my abilities.  In fact because of my problems with neropathy, I have started to play more harmonica, alternative percussion(and traditional percussion), and have added more vocals.  Insofar as my music goes, the "New Me" is going to be just fine.  In fact it is pretty cool to hear the change in the band with more harmonica, mandolin, vocals and percussion on my end.  Life is love and love is life.

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