CSN Login
Members Online: 11

You are here

It's Back

Rocquie's picture
Rocquie
Posts: 841
Joined: Mar 2013

A few days ago, I had a 4 month appointment with my hematologist oncologist. Every appointment I've had with him started with a trip to the lab for blood tests. This time, he hadn't ordered any which I thought very odd. After we talked and he examined me, he said he wanted me to have a CT scan. A nurse walked in and handed me the bottle of that delicious contrast we all love and conveniently they could see me for a scan in 1 hour. So off we (my husband and I) went to have a scan. As the nurse started an IV, she also drew blood for a CBC, CMP, and LDH. Was this all planned in advance? 

For every scan I've had, it was scheduled before I saw the doctor. That way he could go over the results right away. I have never had to wait more than a few hours for results. This time. I waited for a few days. 

Last night my phone rang at 8PM. When I saw it was the doctor calling, I thought this can't be good. When he asked if it was a good time to talk my heart started sinking. When he asked if my husband was there, it sunk deeper. When he asked me to put the phone on speaker so we could both hear, I knew this was not going to be good news. Indeed, he told us the lymphoma is back. Bummer.

Now I am on watch and wait (unless something changes) for 4 months then I will be scanned again. This time it will be before seeing the doctor.

The good news is that in a few days I am leaving for a cruise in the bahamas. That should take my mind off things. 

Cheers,

Rocquie

 

 

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

Hugs to you, warrior wishes and steadfast strength to conquer all things you face.  What perfect timing to be on a cruise to the Bahamas.

I have to ask, why the change in protocol?  Did he or she miss something, did something happen in between appointments to warrant the scan or are you at the year mark?  Systematic in anyway?

Our worst nightmare.  I'm sorry you have to face this monster again but let's hope while your waiting a fancy new drug will be approved and you can zap that nasty a__ __ cancer where the sun doesn't shine!  

I just returned from the British West Indies where the water was clear and light blue, the air was warm, very, very warm where lazy days were welcomed.

Enjoy you time away, may your fears blow way somewhere in the Atlantic and love fill your heart.

Blessing

 

GSP2's picture
GSP2
Posts: 103
Joined: Feb 2015

A symptom or anything you said in retrospect that lit up on his radar ?

Did he recently read something or go to a course perhaps that changed his approach ?

It's a mute point.

I have follicular NHL as well.

Your post struck home.

I truly wish you the best and hope that you can push this diagnosis to the farthest corner of your brain

and enjoy your cruise.

 

Steve.

Anonymous user (not verified)

Without going into details let me say I can relate. Hang on and try to be philosophical about it. We have an acknowledged incurable disease which is never really gone. Its either active or just hiding out waiting to pounce. Great advances are being made in treatment and I am confident FNHL will be cured. My approach, for what its worth, is to keep the beast at bay with the mildest treatment available while looking forward to a breakthrough. Mean time eat drink and be merry. After years of careful healthy eating, vitamins and exercise failed me (i got cancer anyway) i eat what I want, drink whatever I want and take nothing except a daily aspirin. Fool me once shame on you, fool me twice shame on me. I spit in the face of death, taking risks wherever there may be fun to be had. In a way accepting it has given me a degree of freedom I have never experienced before. It approaches being a good thing. In a strange way it has made my life more fruitful.

my very best to you.

Jeff148's picture
Jeff148
Posts: 184
Joined: Apr 2014

It's what we all dread in the back of our minds. I'm so sorry. I just put you back on my prayer list. Know that I will be praying for you daily. Have an awesome cruise!!!

Jeff 

illead's picture
illead
Posts: 863
Joined: Aug 2012

So sorry Roquie, I am just catching up after being gone a few days, and I certainly didn't expect this.  My heart sank also when I read "It's back".  I agree with everyone, it's something we all have in the back of our minds, it's just that when one of our warriors gets hit, it pretty hard to take.  You know we  have been there and still fighting, which I have no doubt you will too.  Always something new out there, so as was said, hope you can get by without something too harsh, but whatever it takes, you will deal with it.  And yes this trip will be good, a real chance to relax and collect your thoughts but also try to keep them at bay.  Just enjoy your trip, tomorrow will be here soon enough.

We all love you,

Becky 

lindary's picture
lindary
Posts: 699
Joined: Mar 2015

Rocquie I have to admit that your appt does sound awfully weird. If he has you on watch & wait it means they found signs of the FNHL but it's not affecting anything, right?  Hopefully it stays that way. I know having scans on a regular basis is not a great thing but better than the monster being active.  I envy you going on the cruise. Enjoy the trip and put this on hold for a while. 

 

po18guy
Posts: 1118
Joined: Nov 2011

As I understand your diagnosis, it was follicular transformed to DLBCL? If so, I think a clinical trial would be appropriate. If not, and it is still follicular, Bendamustine-Rituxan is the gold standard. From what I have seen online, if Rituxan fails, Bendamustine can be added and the two form a synergistic combination, each building on the other. But, first things first: Life is worth living, so enjoy that vacation! 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3546
Joined: May 2012

ROC,

With everyone else, I am terribly disappointed to hear your report. I do not think anyone expected this from your corner;  you had been getting good results, and did everything 'right' toward promoting your health.

It seemed to me the results are perhaps not very detailed yet: what strain is the possible recurrence, etc. As further clarity comes forth, I hope the prognosis is very good.  

I am at a loss, stunned.  I myself have been getting CTs for two years regarding a spot in the base of one lung. The doc has never thought it was malignant. I get the last protocol-required CT in July. I only relate this to explain that I can relate to these latter-day frights.

The fact that your oncologist did not order an immediate biopsy may be some small consolation, a cause to believe this will be easily beatable.

I've never been to the Bahamas as a civilian, but we surfaced many miles offshore from Nassau once and had a brief swim call. Stunningly beautiful, blue-green water. Enjoy !

max

Kaniksu
Posts: 54
Joined: Nov 2015

Rocquie...My heart sank when I saw your post...Itrose again when i saw you are off to the Bahamas..long walks on the. Beach feeling the wonderful breeze sounds just like what the doctor ordered Before you go back into battle again! Positive thoughts being sent your way! Nancy

girliefighter's picture
girliefighter
Posts: 232
Joined: Mar 2013

So sorry to hear this. this was the first thing I saw after not checking in with everyone in months

XXXOOO

Carie

Rocquie's picture
Rocquie
Posts: 841
Joined: Mar 2013

I am back from my Carribean cruise, the timing of which couldn't have been better. The food was delicious and the weather was perfect. Max, you are right about the color of the sea, the aquamarine color was unbelieveable. My brother gave me a massage gift certificate which was awesome. I did not get sea sick, but I did have a raging case of vertigo for the first three days. I was staggering around like a drunk, lunging from hand rail to hand rail. Several times I asked crew members to help me walk. Finally, on the fourth day, I found my sea legs. 

When I wrote the above message, I had not yet read the CT report but now I have. I had actually been suspicious of lymphoma and so had my family doctor. We had both talked to my Hem/Onc. He didn't think our suspicions were warranted and it was during my office visit with him that he became concerned. On his orders for the CT, he wrote "Evaluate for recurrence of lymphoma". The findings indicate three "mildly enlarged" lymph nodes in my abdomen. 

Po18guy, Jim, you are correct in your interpretation of my original diagnosis; follicular lymphoma transformed to DLBCL, which is why I was treated so agressively in the beginning. Apparently the R-CHOP took care of the DLBCL but there was still some FL lurking. While talking to my doctor, I asked him, if this continues to grow, what likely treatment I will receive. He mentioned the drug, Revlimid, a pill, which is traditionally targeted for Multiple Myleoma, Mantle Cell Lymphoma, and myelodysplastic syndrome. He said there have been recent promising results with relapsed follicular lymphoma. It may or may not be combined with Rituxan. 

Special thanks to Jeff for your prayers.

Blessings to all,

Rocquie

 

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

 

Hola Rocquie -

 

I had very advanced, aggressive Stage 4 DLBCL plus Stage 3 FNHL diagnosed in September of ’11.  Other than Neupogen pain, the regimen was not too difficult (in-patient for 6 days for 24/7 R-Epoch then home for 2 weeks.  Wash and repeat 5 more times).  One time during one of the stays and at a moment when my husband wasn’t around, my doc quietly agreed that I was doing great but that the FNHL would be paying me another visit down road.  I kept that lovely piece of news to myself, kind of ignored it and got back to my life.

 

Almost 4 years later (December 2015) I suspected something was up (fatigued, achy-ish and just generally off)…surenuf’ the FNHL was back.  With a vengeance.  Spleen, other organs and quite massive bone involvement. 

 

If your doctor has recommended watch and wait, it’s almost certainly because he’s comfortable with your FNHL’s INnactivity and that’s darn good news.  Even if it becomes active in 2 or 22 years, there are very effective state of the art treatments like stem cell transplants and a really really really good chance that a cure awaits us in the not-to-distant.

 

Me? – My recurrence can’t be a watch and wait…too advanced.  But, it is now almost mid-May 2016 and, after a super-easy 4 months of Bendamustine-Rituxan I’ll be having an autologous Stem Cell Transplant starting around the end of June.  That’s assuming all goes well, which I have no reason to doubt.  Hopefully that will give me many years of remission.  I guess you could call a Stem Cell Transplant sort of the n’est plus ultra” of “watching and waiting”?  Or does anyone out there in the medical community consider a stem cell transplant a cure?

 

Feel good, be ferocious and enjoy each day.

 

Paella

 

 

 

 

 

Anonymous user (not verified)

An FNHL cure is eventually coming. For now, watch and wait is a good strategy as long as the symptoms are bearable and no major organ is imminently threatened. Thats my approach. When it goes inactive I know its not really gone, just waiting to pounce again. Keep it at bay by the least harsh methods available and know a cure is coming at some point. My onc is great. He told me upfront that I would either die "with it or from it". Something is gonna get you eventually. Life is 100% fatal. Accept it and enjoy. If that is not possible in your psyche, i respect that, and suggest the eternal life as offered by religion is your other option. That option doesn't really work for me. We are all different in that respect. Rocqui you are an inspiration, and I hear also a wonderful cook. I am really in to food. Had a crawfish boil over the weekend with crawfish, alligator, andouille sausage, fresh artichokes and more vegetables than I can name. We dumped the whole mess on the table in a huge pile and ate like savages with our hands. Mmmmmm!10 different beers, wine, bourbon and lemon merangue and apple pie with vanilla bean ice cream. Decadent and delicious! Tomorrow belongs to no one. Enjoy today!

littlemac's picture
littlemac
Posts: 22
Joined: Nov 2014

Hi Rocquie.  I am 2 years into my treatments now.  I am praying for you.  You reached out and gave me encouragement after a post when all of this was new to me.  I am reaching back to you. You are incredibly positive and strong.  Keep being a warrior.  

 

MChantal's picture
MChantal
Posts: 108
Joined: Apr 2013

Rocquie,

I am at a loss for words after reading about the year you have had so far. I am praying so hard for you right now and sending all the positive thoughts I potentially can. I hope today was a good day for you and it only continues to progress into brighter and better days to come. As always, take it one day at a time to sometimes, one moment at a time.Life is too precious.

I believe in you and know you have the strength to overcome what has been thrown your way. You are strong.

Love,

Michelle

jennychris's picture
jennychris
Posts: 1
Joined: Sep 2016

I was diagnosed with FL in 2010. Waited and worried for about 5 years . After many ER visits, and the inevitable end of my massive denial I returned to my oncologist who was PISSED off. She was angry that I had blown right past the option of rituxin and forced myself into RCHOP for what was believed to be transformed DBCL. Pathologist conformed and I had my BMB right there in her office Christmas eve 2015. Chemo started Dec, 26 2016. Somewhere towards the end of chemo I was sent to UCSF to discuss SCT because of my age and otherwise good health. Lymphoma specialist informed me that I had not transformed to DBCL but that my FL had moved up to grade three but that the RCHOP was still appropriate treatment. Finished chemo in April, had PET which showed a few spots with hypermetobolic activity. Wondered if this was FL or left over "DBCL" nobody could agree. Oncologist wants to radiate to be sure. overkill....maybe but wants to be safe. Radiologist agrees, lets radiate....BUT, lets get a second opinion . UCSF says no radiation, left over hot spots are a 3 SUV and not life threatening. WRONG!!!!!!! Last week I was hospitalized , septic, huge renal mass blocking my kidney from draining into my bladder. Back flow caused massive kidney infection leading to sepsis. Nephrostomy tube inserted in emergency surgery, ct guided needle biopsy confirmed relapse of lymphoma. Not sure what grade because the center is necrotic and was difficult to read . Doc says since it either returned so quickly, or wasn't cured to begin with that Im dealing with a monster and says salvage chemo and SCT are my last treatment options. Gives me 40% chance of survival. 

 

Can anyone advise? I have no clue what I am dealing with and googling this stuff is like asking the grim reaper for a light for your cigarette. 

Jeff148's picture
Jeff148
Posts: 184
Joined: Apr 2014

Ther are some good resources here. Do this post again as a new subject and not under this and you will get some helpful info. 

Subscribe to Comments for "It's Back"