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Early Reoccurrence after Bendomustine/Rituximab

NailsJHS
Posts: 13
Joined: Jul 2016

Hello,

 

After 6 rounds of Bendo/Ritux which ended in October and several clear PET scans, I recently had an MRI for some shoulder pain that showed evidence that the NHL has returned already.  This is not confirmed as more tests are needed, but based on what I see I don't have a lot of hope. 

My question is, has anyone else experienced such a rapid reoccurrence? If so, what was the next course of treatment?

I am completely devastated and letting myself have a day or two to 'mourn' the loss of my good status...then I will return ready to fight again. 

 

 

 

PBL
Posts: 190
Joined: Jul 2016

Hello NailsJHS,

Just wanted to express my sympathy.

I guess your next steps are a PET Scan and biopsy. Has your radiologist or oncologist given you any comment on your MRI? Any other likely cause for a lesion (post-chemo bone remodeling perhaps...)? Or is that the same lesion you had at initial diagnosis?

Whatever the next course of treatment (if it is confirmed relapse), be sure that there are many possibilities, and that the next treatment can be the successful one - which is all I wish for you.

PBL

 

NailsJHS
Posts: 13
Joined: Jul 2016

Well, the doctor that did the MRI was an orthopedic because I thought/hoped that my shoulder pain was just muscular. Turns out I have a torn labrum and a torn rotator cuff....and something mysterious in the humeral bone which looks like it did last April before treatment.  So, I ran the cd's and the report so the orthopedic to my Oncologist and am waiting to hear from her. I imagine PET and biopsy are indeed next, but as you know everything takes days or weeks to do in the medical world so I may not know anything for a while which is just torture. I am just so upset and shocked that my remission only lasted mere months. 

I hope you are doing well?

PBL
Posts: 190
Joined: Jul 2016

... I can relate to that!

We are patients - and our patience is taxed by all the waiting and not knowing. But, it can't be helped.

Perhaps you've seen the latest Spielberg film, Bridge of Spies? I found altogether comic and admirable how the ever-unblinking Russian spy keeps replying to his lawyer, who wonders at his giving no sign of being in the least worried, 'Would it help?'...

I guess this is the best philosophy we can use in our circumstances.

I have not had a PET Scan yet... I try no to care anymore. I rejoice in days of less pain and increased energy and rest on reverse days.

Do keep me posted on your developments. I'll hope for the best.

PBL

 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3363
Joined: May 2012

Nails,

Many here have had recurrence as rapidly as you may have.

I have never had relapse, and never had Lymphoma in or on bone, but I have had a massive amount of orthopedic trauma (13 ribs, both scapulars broken, T-9 in spine fractured, femur broken in half mid-thigh and again at the hip socket) so I do know a bit about orthopedic healing.  Significant callus tissue grows around irritated bone, so that is at least a remote possibility.  I have had "ossification" of the hip -- spurs growing off into soft tissue from a crack, and the orthopedic surgeon wrote that this is not uncommon with broken or irritated large bone.  He said that he could cut it out, but that surgery usually makes the ossification "mad," and it routinely will grow back.  Just something to live with in my instance.  Bone can do many odd things, as PBL suggested.

You do not say what the "indication" of relapse is, but hopefully it will not be NHL relapse.  And again, numerous folks here have had rapid relapses and lived many a year to tell about it. I hope they write you soon.  I know that it must be a serious emotional blow, and tough.  I had to go last week for my annual PSA blood draw to check for recurrence of prostate cancer.  All liklihood was that there was no recurrence, but it was frightful, unpleasant.  Thankfully, all was well. But I know the experience of worrying, as we all here do.  In August, I get to do the annual HL rechecks.  

Do give yourself the emotional reaction time that you described and hope for the best.

Hoping for a clean PET and biopsy,

max

PBL
Posts: 190
Joined: Jul 2016

'NOT to care"!

#@µ%£$ neuropathy...

NailsJHS
Posts: 13
Joined: Jul 2016

Thank you Max for your words.  I love hearing any REMOTE possibilities!  I still don't have confirmation of anything. MRI was last week but wasn't done by my oncologist so Memorial Sloan Kettering is reviewing the cd of the MRI and then delivering a report to my oncologist.  That said, I am hoping and praying somehow it is not a reoccurrance, but rather some 'bone remodeling' (PBL) or 'calllus tissue growth' (Max) :) 

If anyone has gone through this and can share what the second time around was like I would appreciate it.  Will I do chemo again? Something different? Not knowing is so hard. 

Again thank you to both of you for responding. It is so very nice to be able to vent and discuss with others who get it. 

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