CSN Login
Members Online: 7

You are here

4 Years In Remission from Stage IV Non-Hodgkins DLBCL and Scared for the First Time.

paella's picture
paella
Posts: 81
Joined: Jun 2012

In September of 2011, I wrote the following: “…hearing that my “backache” was an aggressive and very advanced cancer has thrown me for an utter and completely surreal loop but I feel (down deep / in my soul / existentially) that this isn’t gonna’ get me.  Advanced/aggressive DLBCL can be treatable - possibly, curable.  Great.  I’ll take that kind, please and thank you.”

 

It’s been 4 years since I wrote those lines and 4 years since my last of 6 sessions of R-EPOCH; about 500 in-patient hours of that oh-so-lovely cocktail.  Until 1 month ago I remained totally confident and experienced zero doubts that I had well and truly licked this sucker.  Licked it by relying upon an amazingly supportive husband (who spent 30 nights in a hospital “chair/bed”), my terrific Oncologist at COH, the help of a strong constitution, previously great health, and a kick-*** attitude. I’m a female nearing 67.

 

In the past month, however, I find myself frightfully concerned that I may be experiencing relapse.  This is NOT LIKE ME!   

 

In 2 days I have my year 4 checkup (have gone every 6 months) and all has been stellar.  I do understand that Tuesday’s blood work and my doc’s exam will tell me what’s what but I can’t seem to get this off my mind.  But meantime, I just wanted to get my nerves in check by writing and posting.

 

I should note that the past 6 months have been very stressful, mainly due to illness of spouse who is now completely fine.  Additionally, in November and December 2015 I incurred a couple of minor but painful sports related injuries (right upper leg and then neck).  Those have, apparently, healed.   I guess I’m hoping that they may not actually BE completely healed and could be affecting /causing the symptoms that I’m only very recently noticing:

 

  • Previous (very slight) discomfort in and around the Iliac nodes was discussed with my Doc at every exam;  palpating yielded nothing and blood work was fine so no worries.  In just the last 3 weeks, though, that discomfort has become pain and is nearly-always accompanied by back pain in the lower-back/buttock area (sciatic nerve area?).  Let’s call it a combined 3.5 on a 10 scale with occasional peaks to a 5.  Heat and low-dose pain meds help.  This combination pain only occurs at the end of the day usually after lying down or reclining.

 

  • Brand new pain on the right side (below ribcage)…like a bad stitch in the side when running.  It waxes and wains but at its worse is a 4.5 on the pain scale.  Have had this only a total of maybe 3 hours in the last 3 days.

 

  • Itching – only occasional but always around my neck area.   

 

  • Headache – I rarely have any headaches.  But I did have them during 3 recent consecutive weeks primarily focused behind and around my right eye.   Perhaps brought on by neck injury (above)?  They are largely gone now.

 

  • Dizziness – 4 times in past 2 months I’ve felt light-headed and once heard a whooshing sound (like the sound of my own blood pumping.)  These disappeared immediately upon sitting.

 

  • Swollen neck lymph nodes – If there are any they are very mercurial;  sometimes I think I feel one in my neck but other times I feel nothing.  Imagination due to negative thoughts?   

 

Well, it does feel better getting this all down in writing.  If for no other reason than I need to be prepared to be very detailed with my Doctor.

 

Any thoughts out there?

 

Thanks for listening –

 

Paella

lindary's picture
lindary
Posts: 705
Joined: Mar 2015

Some of those aches and pains could be just aches and pains. But having a boss who is a cancer survivor and recently having gotten to that stage myself, I can understand your concerns. Some of it could be from not drinking enough water but with that list of issues you are right to see your dr. Don't give up until you feel that you have all of the answers you need. I hope you still get the "all clear" sign.

paella's picture
paella
Posts: 81
Joined: Jun 2012

How are YOU doing?

I'll post after my appt.

 

Paella

OO7's picture
OO7
Posts: 282
Joined: Sep 2014

First I would to congratulate you on your success and positive perseverance in reclaiming your health.  I can relate to where your coming from in the manner of which you faced your cancer.  I too am positive but it can be exhausting at times. I'm only a year since my last treatment and recieved the best possible result.  

I have stage IV Follicular Non Hodgkins Lymphoma and the symptoms may be different?  When I read your post I first wondered what was your injury, could some of your symptoms be non related to lymphoma?  I was very symptomatic, extreme fatigue, swollen lymph nodes, freezing cold, back and legs itched.  I had no pain except for where one of the nodes continued to grow and encroached upon the back of my jaw.  My blood work was fine.

I agree with Linda, too many symptoms and would seek answers to all your concerns.  I feel once we're admitted into this club all cards are off the table and everything should be taken seriously.  Ten years before I was diagnosis I had a emergency mamogram for a small hard circular like spot I found.  Over the years it grew, one leading nationally and internationally recognized arrogant doctor who was reading my scans, laughed at my concern and dismissed it as it was NOTHING.  Never once considered lymphoma....  I could have been stage I instead of stage IV.

I hope and pray these are non cancer related concerns and addressed successfully and swiftly.

 

paella's picture
paella
Posts: 81
Joined: Jun 2012

Hi, 007 –

 

What was your treatment like for stage IV Follicular?  I’m so glad to hear that you received the best possible results. It IS hard getting through the first year and a half.  Every joint, ligament and muscle seemed to hurt.  Looking back, I think the first 18 months after the last chemo is almost as hard as the chemo.  Did you have to take Neupogen shots?  Exercise really helped me (plus other elements of a healthy lifestyle).  Frankly, RX pain meds, muscle relaxants and Ativan helped a lot, too, when needed.  Are you working 8 hour days, running a household, taking care of kids?  Do you have a support structure (helpers, caring neighbors, etc.)?  I was retired when diagnosed and my spouse was a champ at pitching in…he even learned how to make my favorite staple; Carrot/Ginger Soup!  I honestly don’t know how younger people with jobs and families cope.  Maybe via a church community?    

 

Yes, “positivity” CAN be exhausting.  I’ve read that NHL survivors can actually have PTSD**!  But the alternative to Positive is much MORE exhausting, physically dangerous and really really hard on everyone around you.  Plus, if you have adult children (or even friends) who are watching you fight this incredibly unwelcome challenge, isn’t it better (and less stressful) for them to see you face it with the lightest heart you can summon and with ferociously positive determination? 

 

I was diagnosed with Stage 4 DLBCL plus Grade 3 Follicular Lymphoma on 9/8/11.  Other than recurrent back pain (for about 3 years) and (in retrospect) night sweats, I had no symptoms.  I saw several doctors about the backache the last of which sent me for an X-ray of my lower spine which showed some arthritis.  I wish she had urged me to have a CT scan – I would have done it in a heartbeat even without insurance, but she was pretty blasé.

 

My cancer was ultimately discovered only because my husband insisted that I go to an emergency room when the back pain had eventually worsened with a vengeance.  (We were 600 miles from home doing a temp job.)  The docs there DID talk me into a CT scan (after doing a kidney ultrasound which showed no problems).  ER docs apparently don’t make diagnoses, per se, but they said the CT showed lots of swollen lymph nodes in my lower back and abdomen and I needed an immediate PET scan and a “multi-disciplinary team of oncologists” ASAP.     

 

Anyway, before we knew it (literally in about 14 days) I’d had a cervical lymph-node-biopsy, a Pet Scan, a bone-marrow biopsy, official diagnosis then WHAM BAM the treatment started.  (R-EPOCH administered 24/7 during 6 cycles of five days each as an inpatient.  Once each session I had a lumbar puncture to analyze CSF and to put a prophylactic chemo into my brain.)

 

Keep up the good work.  Always remember how strong you are.  If you believe it, you will be! 

 

Here are my favorite strength-reminder words: 

ferocious, furious, intense, strong, powerful, forceful, fierce, passionate, strapping, sturdy, tough, stalwart, robust, solid, durable, resilient, heavy-duty, hard-hitting, enduring, raging, unstoppable, commanding, authoritative, prevailing, dominant, potent, vigorous, determined , mindful, audacious, willful.  

 

All the best - Paella

 

**http://news.cancerconnect.com/non-hodgkins-lymphoma-survivors-may-suffer-symptoms-of-post-traumatic-stress/). 

OO7's picture
OO7
Posts: 282
Joined: Sep 2014

Hello Paella,

l'm crossing my fingers for good luck and hoping you doctor visit went well.  As for my treatment I decided not to do anything other than Rituximab.  One six hour infusion for four weeks then four more for maintenance every eight weeks.  Which became three because my white counts were low.  

Three times I went into my oncologists office and stared the Neupogen needle down but each time the counts increased a tiny bit so my doctor said to wait.  I should note my doctor happens to me one of my very best friends and know if we were'nt so close I would have had it.  I know he was sparking me side effects and for someone with low blood counts I never got sick.  Even after spending a grooling night nursing my son with a hideous stomach flu all night long then rushed him into the hospital where they didn't have enough rooms or beds (everyone was sick) I walked away unscathed.  A few weeks later I rushed my husband into the ER, feared he was having a heart attack but it was the same darn illness. Again I was fine.  My friend is in touch all the time and if my counts got to 500 I would have the shot but they were always a bit above and great otherwise.

 

The only thing I did was take my food to a new level.  I became an Admiral in my own food army, raised the bar and continue to because quite simply I feel better when I do.  I tried working out after treatment but I quickly crashed and burned.  Rituxan kidnapped my core energy and because I was so fit before treatment, I was hard on myself.  I should note I developed shortness of breath too.  Still have that.  In the next few weeks I'm planning on giving it a try again.  I can't wait!!!!

I'm not working out of the house anymore.  You see my father was diagnosis three weeks after a I was.  He too had stage IV NHL but he had mantel cell.  That's was when life became tricky.  For the obvious reason I choose to hide my cancer.  For six months about three people knew, not even my children.  I had to protect my father, mother too.

I put my treatment on hold so I could be with him.  He almost died to an infection ten days after his first round of CHOP.

 

I learned to dig deep, then deeper, deeper still.  Constantly confronted with new obstacals and recently lost my dad while holding his hand 2:30 in the morning August 1st.

 

If anyone should have PSTD it's me but I just don't have anger and I'm an optimist to the core.  Just writing about my father my eyes are wet but I simply refuse to morn rather I choose to celebrate him.  I am broken no doubt but even now there is a little mighty mouse inside of me pushing me forward.  Don't get me wrong I have many bad moments yesterday was difficult for me yet God sent me an angle.  Pissy as I can be, I'm grateful I can still see his artwork and know I got this......

 

Dear Lord I put you to sleep with this!  Sorry and I failed to answer all your questions but before I leave........Carrot ginger! My favorite!!!  Now this former international model has to turn into a taxi driver and have to pick up my children, in a BLIZZARD,  Love the stuff, praying for a snow day Tomorrow !!!!!

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3627
Joined: May 2012

Paella,

My 'gut read' of your concern, which I would say the majority of writers here admit to themselves, is follow-up anxiety.

I have it myself, and it more-or-less fades into the background until 'the visit' is near.

Three things you described I have experienced exactly:  1. I recently started waking up with itching.  I called my NP, and after a little review, we realized it was from a narcotic I had been taking following hernia surgery.  I stopped the med, and the itching went away.  2. A swelling sensation; mine was in my throat.  The onc did a thorough touch exam, and said that sinus glands were in the area, but that no nodes were enlarged. I did not have a cold that I could detect, but the sensation reoccures periodically, and now I just ignore it. Similiar under my armpits: At times it is hard to lower the arms, the area feels so swollen.  But the onc said that this "puffy sensation" is common in lymphoma patients. All touch exams were negative. I now ignore that as well. 

3. I have had a pain in my lower right gut for years. My gall bladder was removed from a little above this pain area four years ago. Doctors have felt it and said that they felt nothing, and added that "there isn't much in that area to hurt anyway." I have had clean routine colonoscopies. Routine CTs in follow-up have shown nothng there.  Your mystery pain is more likely random than lymphoma.  Headaches and dizziness too are not ordinarily a strong lymphoma indication.   You might want your sugar levels and blood pressure checked, however.  If your 'swollen nodes' are not even detectable much of the time, what does that suggest ?  Cancer inside a node does not come and go, it just comes and stays.

I am five years clean of HL; approximately your time frame.  Follow-up anxiety never completely leave most survivors is my assessment. But it does seem to mitigate with most over time.  I have a prostate cancer PSA test coming up this month (following prostate removal for Stage IIA prostate cancer), and lung scans from a pulmonologist (following detection of a lung nodule two years ago, which ais almost certainly benign), and a lymphoma annual follow-up with my NP scheduled for the summer (pertaining to my Stage IIIA HL). 

We can all relate to your worries.

I love your name, which sounds Roman to me.

I hope we hear from you in a day or two with "all clear" news. I suspect that we will,

 

max

paella's picture
paella
Posts: 81
Joined: Jun 2012

Seriously, it was just what I needed to hear since tomorrow is the big year 4 check up day.  Good common sense, logic and the perfect amount of encouragement  - thanks so much!

I read your profile and recommend that everyone read your paragraph about BEING ONE'S OWN ADVOCATE.

My husband also had prostate cancer (in 2010 when he was 65) and prostatectomy via DaVinci.  I found that prior to his diagnosis /surgery I became that buried "research person".  I knew more about prostate cancer than most men (I'm a 66 year-old female but haven't filled out a csn profile). Ultimately it was a few fellas on a prostate cancer forum (name escapes me now) that offered some of the most valuable info during what felt like thousands of hours of internet. 

 

Regards - Paella

 

 

 

 

 

lindary's picture
lindary
Posts: 705
Joined: Mar 2015

Of course being 65 and not always very active I tend to have a certain amount of aches & pains anyway. Lower back, I've had that since the third kid. Knees had been a problem for the last 4 or 5 years. Feet hurting when I stand too long. That is newer but the cause is that I spent most of last year sitting or resting. Now that I have been back in the office every day for the last 3 months, which give me many chances to just stand for 10 mins or more, it seems my feet are able to handle longer periods of standing. 

Since all of this started I have been on my husband about any aches & pains he is having. Result is his dr ran some test and they found that the stent they put in by the one kidney wasn't working and a new one had to be put in. 

Right now it is so cold in our area I am lucky to feel anything but frozen.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3627
Joined: May 2012

Paella,

I have been called many things, but being as good as an mg of Ativan is very likely my finest moment ever.

I am glad your husband is well.... Yes, there are many encyclopedic members there at prostate. "Vasco" is preeminent; his range of knowledge is astonishing, actually.  He is from Portugal I believe, but has received treatments all around the world....we all love him dearly.

You are so detailed and have such precision in your writing that I hope you decide to do a Profile.   I found that my "crash course" in prostate cancer actually assisted me in understanding the uniqueness of lymphoma.  You are "cross fertilized" in information as well.  Writing at CSN is as beneficial to the writer as to the reader.  I get more here that I have ever given.

 

Awaiting your good wellness report,

max

paella's picture
paella
Posts: 81
Joined: Jun 2012

Hello all (esp. Max, lindery and 007)  

Sadly, my worries about today’s check-up were to some degree grounded in reality.  Won’t know to  what degree until next week’s just-scheduled Pet Scan.  The Doc agreed that many of my newly-acquired (minor) aches and pains probably have nothing to do with NHL but some of those plus a few palpable nodes plus mostly the Blood Work made her decide that this needs to be delved into.  It may end up being nothing but honestly I’m so much less worried than I have been.  Now why is that?  Well, I’m back in the hands of the worst enemies that a blood disease can have and it better be shaking in its friggin’ boots! 

My culprit blood item was the LDH.  Did you know that sometime in the last six months the acceptable range of LDH was changed from 313-618 to 140–271.  Can anyone explain why and what it means?  Today mine was 302…not horrifying under the new scale but certainly worthy of investigation. All these Post-Chemo years (but under the old LDH regime) it was never over 508 and usually in the mid-400's.)   

So, sure, a relapse will be a bump in the road but I have to say that, overall I feel too generally healthy for it to be more than a teeny bump.  I plan to stay OFF the internet (except for this site and to try to understand the why, the how and the meaning of this LDH revision).  I’ll think about autologous bone marrow transplants, clinical trials, etc. only when I actually have to think about them.  It’s clear that the state of the art in Treatment has come a long way since 2011 with more effective less toxic alternatives and better stuff to come, no doubt.

 I’m off to have at least 2 glasses of wine and some disgustingly well-marbled beef with my sweet patootie.

 

Until Later – Paella

 

 

OO7's picture
OO7
Posts: 282
Joined: Sep 2014

Enjoy the food and wine, you haven't crossed over to the dark side today so Don't go there....

 

 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3627
Joined: May 2012

Paella,

While the oncologist scheduling you for a PET is objectively disappointing and would bother anyone, it does not seem like a radical game-changer to me, writing from the luxury of a distance.   It does not take a huge amount of data to get our docs to test us patients who in the past have had late stage lymphoma.  You presented enough potentially worrisome facts to render it very likely that the test would be ordered.  Thoroughness is a good thing !

LDH.  "Normal Range" values often vary by lab.  My LDH results from 2009 show a normal range of 100-250 IU/L . My most recent LDH test, from August, 2014 shows a normal range of 90-245 IU/L. My lab's range, both in 2009 and today are consistent with your labs current standards.  I cannot square my lab's numbers with your old lab's numbers (313-618) however, unless a differing unit of measure was employed.  Ask you oncologist to explain this.  Consistent with this, I cannot understand a routine result of LDH of ~450 which you report.  Again, I would have the doctor fit the lab's previous measuring criteria into your new results.  I suspect she can readily explain it.

LDH is a measure primarily of cell-death residue (by product of cell death).  It will shoot up following trauma or serious infection.  It is also the test used for years in ER's to determine if a heart attack has occured, and whether or not a known heart attack caused significant muscle damage.

Given that your baseline while cancer-free was 450, I would not let this number scare me; I would simply want to know how to convert the old numbers into the lab's new standard which shifted radically it seems.  Take your old and new results to your next office visit and demand an explanation, IN ENGLISH.

Be your own advocate !  I am not a 'whistle-in-the-dark' kind of guy. I know relapse occures.  The PET is a good thing.  But I still hope it shows not potential 'hot spots.'

As Tom Petty sang, "the waiting is the hardest part."

 

max

This article is complex, but may be of value:  https://en.wikipedia.org/wiki/Lactate_dehydrogenase

 

 

Rocquie's picture
Rocquie
Posts: 851
Joined: Mar 2013

Paella, I was wondering if by chance your test was sent to a different lab? Because, as Max says, the normal reference range for LDH can vary widely from lab to lab. Also, my lab, which is right within my cancer clinic, delivers my CBC and metabolic profile tests within 30 minutes. But we have to wait 24 hours for the LDH. It leaves me wondering why you got yours the same day and I have to wait? 

From the time I was diagnosed in 2012 until my latest appointment last month, my lab has consistently referenced 105 - 333 as the normal range for LDH. 

I'm glad your doctor has ordered a PET scan. Like you, I would feel more comfortable, when in doubt, to go ahead and find out rather than continue to worry. I do hope everything is A-OK. I would also ask about those reference changes to LDH and perhaps ask to have the test repeated. 

Hugs,

Rocquie

 

Anonymous user (not verified)

Paella, I was told to always get my blood work AND my PET from the same labs. Apparently most bloodwork is automated and results vary from lab to lab. LDH in particular is tricky and should always be done manually. Don't be too concerned. I saw an article where blood samples taken at the same time with the results being significantly different. I know this is not encouraging but be assured trends are more important than absolute values. So in a nutshell if you use multiple labs you are compaing apples to oranges and maybe tangerines.

 

stay calm, return fire

paella's picture
paella
Posts: 81
Joined: Jun 2012

To everyone – thanks you for the input.  

Hope everyone is well. 

Here’s a question about the csn forum.  If I reply to “last reply” (in this case GKH) is that meant to be a reply to all previous replies?  Probably a stupid question but I’m extremely not techy.  I guess my question really is:  if I want to reply IN GENERAL, to the general subject being discussed, am I doing it right by replying to the “last reply” in a thread?   

Anyway, am feeling great, staying busy and, as Mother Maybelle said, “keeping on the sunny side”.   Petscan still scheduled for Tuesday AM…although waiting to hear if Medicare will cover it (yikes). 

FYI - My lab is the City of Hope lab.  Their LDH results are a bit later than the rest of the blood work, but always within 2 to 3 hours.  I think only once or twice did they arrive after my checkup had been completed so that the results had to be phoned in to me. 

I’ve suggested a re-take of the LDH to see what the team there thinks.   

Best - Paella  

Oh – and this is a great explanation of the lymphoma blood test purposes and meanings.  http://www.lymphomation.org/tests-labs.htm

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3627
Joined: May 2012

Paella,

I will certainly be hoping and praying on Tuesday morning that the PET shows "no orange or red."

There is no "right" or "wrong" way to reply, that I am aware of. Ordinarily, if you reply to one given writer, your response will appear under that box, and be slightly indented

I ordinarily write out the name of the person I am addressing, to try to avoid confusion (like someone would do in a hand-written letter).  Similiarly, if I am replying to several people, I will mention that it is to "All Responders," or someting similiar.  But again, internet writing, like texting, is a pretty sloppy, make-it-up-as-you-go-along medium.  I use a theology Discussion Board, and their system tags the top of every response to whomever you are replying to , but CNS does not have that system in place here.

I recall that my LDH also took longer to develop than the rest of the panel "back in the day," but I do not know if that is still the case.  LDH and Sedementation Rate are specialty tests, not included in most CBC lab sets. Labs sell "panels" as "sets." These (like the CBC) are fairly standardized, but there are small variations between labs even between what is included. One lab will have a test in their CBC "package" that another lab might not. My cancer center (which has its own lab at most of their locations) included the LDH and Sedementation under what they called a "Metabolic Panel."

I recall an oddity of my LDH history. My LDH was NORMAL when I was diagnosed with advanced disease. The LDH ony shot up after chemo began. My LDH then precisely tracked with the shrinkage of the tumor sizes, as they shrank (it went down as the tumors reduced). After chemo ended, by LDH went back to normal.  What I took from this (I never asked my doctor about it) is that LDH would have been of no diagnostic value of lymphoma in my case. The higher readings seems to be caused by cell death induced by the drugs; that it, they detected cell damage from the millions of cancer cells that the drugs were killing, which makes sense, given that the range went back to normal after treatment.  I do not know if anyone else has observed this, and I do not know if it is common or uncommon/odd.  I will ask in July when I see my NP.  The link you provided says that an absolute value of a test result, even if it is abnormal, is less significant that a change, especially a steady trend. This might mean that you staying at around 450 for several years is not indicative of lymphoma. This is just a speculation on my untrained part.

I have a few years before Medicare takes over my insurance,  so I do not know really what they are like, but I cannot imagine that they would not pay for the PET.

I will read your Testing link first chance I get.

I am still optimistic about Tuesday !   I have a one-year post-prostactomy PSA on the 29th myself. 

I know that City of Hope is one of the best, I believe mostly in the LA area.  Lots of writers here are from California, and it seems like most on the prostate board are from California, for some reason.   My oncologist went to Stanford and UCLA. They don't get any better than that. I grew up on the coast in Charleston, SC, but have lived in the "Upstate" of SC for years now, at the base of the Smokey Mountains. I am still called a "flatlander" and "geechie."   "Geechie" is a regional term applied to whites from the coastal regions of SC and Georgia; supposidely we speak a bit differently.   Not to be confused with "Gullah," which was a language that developed among sea island slaves and slave descenants.  A few Gyullah speakers are still to be found, and there are efforts to preserve it. But as I grew up in the 60s there were a lot of Gullah speakers along the beaches, and I fully understood it. 

Senator Ernest F. Hollings was from Charleston and spoke geechie perfectly, if you can find him on youtube

http://www.urbandictionary.com/define.php?term=geechy

"Fritz," as he was called: https://www.youtube.com/watch?v=3lobkzXRt-o

 

 

As I said, we can all relate to your anxiety at the moment.  I like that wine and beef therapy you mentioned the other day !

max

paella's picture
paella
Posts: 81
Joined: Jun 2012

Sorry to report that I am, indeed, having recurrence of lymphoma. Petscan results from 1/19/15 show renewed activity…both nodal and extra-nodal. There is presence of not-seen-before bone lesions (but nothing to indicate that they’re lytic or blastic).  And the spleen is now involved.

 

My doc was at a conference when she called me yesterday, thus I only know the nutshell stuff she told me.  She’ll be back in-touch by phone today or tomorrow.

 Gameplan: She will schedule me ASAP for a biopsy (after determining with radiology the safest, easiest place from which to harvest a biopsy).  They’ll do Bone Marrow and CSF testing same day.  Then the histology analysis begins which could take a week or more….as we all know, this requires meticulous and expert work as so much goes into completing and classifying and subtyping, etc. etc.

 

Well, s---, d--- and peepee caca.   Another bump in the road which I honestly thought I’d avoid.  But I am definitely feeling physically / emotionally /mentally very positive, strong and determined. I believe that feeding the *Good Wolf is the only logical way to live…a bit like Pascal’s wager, I guess.

 

http://www.nanticokeindians.org/tale_of_two_wolves.cfm

 

Paella 

OO7's picture
OO7
Posts: 282
Joined: Sep 2014

and mad as hell!  I too share and believe in your outlook on life but when you're feeling human just reach out and I will cheer YOU on.

ARGH.....

 

Be good to yourself.  I'm speechless and sounding more like a truck driver than you.

 

More later,...

 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3627
Joined: May 2012

 

P,

Let us hope and pray that whatever strain you now have (it may have morphed into a different form of lymphoma) it is readily treatable and returnable to complete remission.  Be aware also that SCT is not the only form of second-line treatment for many types of NHL.  I am unaware of the particulars of your type regarding second-line conventions.  LOTS of patients here are on single- or multi-drug maintenance therapies that seem to approximate full wellness for their particular disease status.

I would like to add that you should be proud and thankful that you went with your instincts.  They were exactly correct.  You are proof as to why smart people seem to live longer !  You will navigate the choices that open up before you very successfully and well.

max 

OO7's picture
OO7
Posts: 282
Joined: Sep 2014

Mr. Max,

As a submarine sailor you set a gold standard, my lanuage is filled with venom and grit and not a worthy comparison.  That's a compliment.  My father-in-law was in the Navy, he  fought in WW2 in battle so nasty that never spoke of it.  One of the finest men I have ever met.  No wonder I married his son.

P.

What a week, deep down did you know?  I ask because at first read I guessed/feared you did.  I hate all of this.  Everything that each one of us endured.  Like all of us, we're so busy, I wanted to say more but the lack of time, commitments and perhaps being a bit stunned prevented me.

I don't know how you feel, how could I.  One year out of the gate, living a sassy life but think of this everyday.  I admire your positivity, I have it too but fear my reservoir of strength will run dry.  The hell with that, put your amour on and fight like H E double hockey sticks!  Trying to clean up the rancid words I never knew existed before from my crazy mind..... 

Be good to yourself!

 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3627
Joined: May 2012

007,

After being in the sub service a few years, I rewatched Animal House with some friends one night.

After about an hour into the movie, I asked them, "When does the gross stuff start ?"  Everything in Animal House was like a church service, compared to sub life.  

We had an initiation one day. The corpsman was required to be there.... to prevent death.  Watch the German WW II movie Das Boot ("The Boat").   If conveys some idea....

.

lindary's picture
lindary
Posts: 705
Joined: Mar 2015

I hope they find that this reoccurrance is treatable and goes back into remission. I also like your use of such technical terms (peepee caca). Makes me feel like I am talking with family.  :-)  

 

OO7's picture
OO7
Posts: 282
Joined: Sep 2014

what a nice thing to say Linda.....

lindary's picture
lindary
Posts: 705
Joined: Mar 2015

My parents seldom used swear words and when they did it was **** or damn, usually my mom. As my kids were growing up I ended to use those same 2 words but also terms like horse-pucky. It gets even weirder when with are with my brother & his family. Someone will drop and f*bomb, get scolded for it (they are all adults) and then the silly words start coming out. pee-pee-caca is one of them. Laughing

paella's picture
paella
Posts: 81
Joined: Jun 2012

 So, the NOT KNOWING was the really hard part.   

And from first being “scared” about recurrence (written 1/10/16) to finally knowing what’s what has been only 30 days….and I’ll have my first chemo in 2 days.  30 days from being scared for the first time to beginning the next round of battle.   

Briefly, both the B-cell and the follicular are back but in a low grade form.  Still feel really good and strong – walking a mile sometimes 2 every day.  Game plan:  2-consecutive days of chemo (out-patient) consisting of Rituximab and Bendamustine. This will be a once-a-month event for 2 or 3 or 4 or 5 or maybe 6 months.  Every 2 months they’ll do a petscan to see if the cancer has been knocked back into remission and as soon as it is, they’ll start the autologous stem cell transplant business.  I know that involves some real whack-a-mole chemo then 30 days in the hospital.  

I may have gotten this all the way correct or just a little bit correct…my notes are atrocious.   

Did I mention the tough part was not knowing?  Or, more accurately, knowing that something was amiss but not knowing how OK or bad things were.  And the really really really tough part was forcing myself to ignore the logical, cogent, rational and well-reasoned arguments made by the bad wolf.  I have to admit I tossed him a bone or two but tried super hard to keep the best food for the good wolf.  Still not always easy.   

Thanks for all your thoughts and input.  Does anybody know anything about the Bendamustine and Rituximab?  Apparently (and of absolutely ZERO importance to me) is that I won’t lose my hair.  I had a pretty easy time of it with the R-Epoch for the 5 months I was on it starting late 2011 and became the Imelda Marcos of Beanies.  Can I be brave and not bald?  Hmmm.  Letcha’ know. 

Also any feedback about autologous stem cell transplants and what to expect would be appreciated.  Maybe I should start a new subject? 

 Best - Paella

lindary's picture
lindary
Posts: 705
Joined: Mar 2015

I see my Stem Cell dr to find out what the plans are now for me. I'll let you know. 

paella's picture
paella
Posts: 81
Joined: Jun 2012

Thanks for staying in touch!...When do you see your doc and is he/she specifically a "stem cell" doc?  Where are you located (roughly) and what hospitcal/clinic do you call your own?

Best - Paella

 

 

lindary's picture
lindary
Posts: 705
Joined: Mar 2015

This is a Stem Cell Dr. She is part of the hemotology/oncology team at Rush Hospital in Chgo. My local hospital is part of the Amita group but my oncologist if with the Northwest Oncology group that is with a number of hospitals in the area. She orignally worked at Rush but moved to the suburbs because of travel times. 

Subscribe to Comments for "4 Years In Remission from Stage IV Non-Hodgkins DLBCL and Scared for the First Time."