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Brand new with Follicular Lymphoma - hello!

JeaniNOW1's picture
JeaniNOW1
Posts: 14
Joined: Oct 2018

Just now I found this discussion board and it seems like a good one for me to get involved with.  Just had my first pair of chemo infusions (Rituxan and Bendamustine) on Oct 22-23 (first of six expected).  Not terribly eventful, other than severe constipation from the anti-nausea meds included with the "pre" meds that were infused.  (I didn't take any Zofran and didn't need it afterwards.)  Now nearly a week later I'm feeling quite well, better than I expected to feel.  I have a wonderful support system, lots of help from my sweet hubby.  Trying to drink lots of water and make sure to exercise.

At this point, mainly, I just wanted to introduce myself.  But I'm also wondering how much I need to isolate from some of my favorite groups and gatherings because of my expected low white cells.  This will surely be a challenge, facing the holidays!

Thanks,

Jeani

 

twowheels's picture
twowheels
Posts: 14
Joined: Jun 2017

Hello Jean. Glad to hear it's "not terribly eventful...". Members with your specific diagnosis will provide deeper insight into therapy and ramifications.

But I "may" be able to share some insight into ANC (absolute neutrophil count) and your concern w/neutropenia. I was tested weekly to monitor the precipitous ANC drops (different chemo ABVD) after each of my infusions.
A shot of Neulasta (Neupogen, Neupogen Pro. Zarxio) rocketed the numbers within 24hrs.

Do you have labwork (CBC w/Diff) scheduled before or between trtmts?
Are you receiving/prescribed one of the above "colony stimulating growth factors" which stimulates WBCs. (You'll feel it working :-)

If it's any assurance, my ANC measured ZERO (0.04) on day of 2nd trtmnt (which was then delayed).

After that, Onc began monitoring my ANC weekly.  I took/required only 2 (staggered) of the prescribed 5 injections between each trtmnt (14 days). While I remained concious of my surroundings, avoiding people coughing/sneezing, shaking hands and buffet style meals, I had plenty of socializing with family and friends at BBQ's and Weddings.

All the best

 

 

 

 

 

JeaniNOW1's picture
JeaniNOW1
Posts: 14
Joined: Oct 2018

Hi Twowheels!  Thanks for your comments!  Note that I edited my original post to explain that I didn't take any of the Zofran pills, following chemo - only had it in my system from the "pre" meds in the infusions.  I do find that an occasional .5mg of Ativan also fights nausea, and it helps me sleep besides, but nausea really hasn't been much of an issue.

I'm curious about Neulasta.  A relative of mine was given that because she got a couple UTIs while on chemo, and the Neulasta helped her after those.  It has not been mentioned in my case, and I'll ask when I meet with the Cancer Center team this Weds.  The first blood labs that I believe are scheduled will be right before my second treatment in mid-November, so in the meantime I'll have no idea how low my white cells may have gone.

Jeani

 

po18guy
Posts: 910
Joined: Nov 2011

Sorry that you have to join! B-R is seemingly the new gold standard in follicular treatment. And, it is better tolerated than many older regimens - once any infusion reactions are controlled. As to the anti-emetics, I pretty much traveled with Zofran at the ready. As to the constipation that the anti-emetics cause, you may be able to kill two birds with one stone here. I did not have B-R, but did have several other drugs that caused nausea.

Tiring of the constipation, I stopped the Zofran at one point and my body had apparently become acclimated to the drugs, as I did not have nausea. However, at the first sign of nausea, I popped a tab of Zofran under my tongue, nitroglycerine-like, and let it melt. The nausea dissipated and went away completely within a few minutes.

Your kidneys need lots of flushing, so water is the natural choice. However, there are flavored drink mixes that are sweetened with such as sorbitol, mannitol, erythritol, etc. These are naturally occurring "sugar alcohols" and while they add sweetness, they carry little to no sugar or calories. The big plus for those suffering from constipation: they cause a concentration of water in the colon, thus naturally relieving much of the constipation.

Crystal Light, Hawaiian Punch and other sugar-free powdered drink mixes have them. This was very good news for me, as it got rather boring pouring down gallons of unflavored water. You might give them a try.  

And again, welcome!

JeaniNOW1's picture
JeaniNOW1
Posts: 14
Joined: Oct 2018

Hi Po18guy.  Thanks for the info!  I'll keep those drinks in mind for when I get too tired of W A T E R ... right now a sweet taste in my drink does not appeal much to me, but that may well change!  I've considered adding a bit of lemon and stevia to my water... that might appeal more than the sweet powdered drinks.

All of this is brand new - got kind of blind-sided with this diagnosis - so I have a lot to learn about how best to navigate my way during the coming months.  Any and all tips are valued!

Jeani

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3074
Joined: May 2012

Welcome to you, Jeani.

It sound like your a quick study, and already conversant in undergoing therapy. As Po mentioned, B&R does seem to be replacing the standard R-CHOP for follicular for first-line. It has been the preferred treatment for follicular second-line for a while now.  Follicular is very indolent, slow-moving -- a lazy cancer.  But it is not technically curable, although it is almost always easily controlled. Many people with it go straight in to complete remission for many years, some forever.  Some oncoloogists put their follicular patients on long-term maintenance after successful first-line, even in remission.

Neulasta is a colony stimulator, kick-starting the stem cells into generating WBCs.  It is almost an assumable thing for R-CHOP, but perhaps not with B&R, which has fewer harsh drugs involved, of course. But if you do later need it, no big deal. An injection given in the stomach, with few side-effects for most people. If it does have side-effects, it is usually bone pain, primarily iin people with significant arthritis.

Glad you are off to a good start,

max

JeaniNOW1's picture
JeaniNOW1
Posts: 14
Joined: Oct 2018

I just now ordered a Stur brand drink powder which sounds pretty healthy, a combo of stevia, sugar and natural fruit flavors.  Anyone familiar with it?

po18guy
Posts: 910
Joined: Nov 2011

But it sounds good. Will have to have a look.

JeaniNOW1's picture
JeaniNOW1
Posts: 14
Joined: Oct 2018

I found it on Amazon.  Not sure if it's in any of our local stores... I'll let you know what I think of it!

JeaniNOW1's picture
JeaniNOW1
Posts: 14
Joined: Oct 2018

My variety pack arrived today, and just now I've been mixing the powder, starting very weak and increasing the amount for more flavor.  I'm drinking some of the Big Orange Burst, and I think this will be a good way for me to drink LOTS more water.  I'm drinking it at 1/2 strength now, and it tastes pretty good to me... not too sweet, not too boring.

Darn.  After tasting two of the flavors, I've decided I don't much like the flavor.  So please cancel my recommendation of this drink powder!

lindary's picture
lindary
Posts: 626
Joined: Mar 2015

Welcome Jeni. 

I did 6 cycles of R-Chop starting near the end of January. The day after the R-Chop I got a Nuelasta shop. I didn't think I would have problems with nausea but I took the meds any way. I didn't want to find out the hard way I was wrong on that one. As to constipation, this was a concern for me. After my first round of chemo it was a struggle to get regular. Then I stumbled across a comment somewhere where the person said they found it best to start taking the anti-constipation meds the night before the chemo. Worked like a charm. 

As for isolation.  Well I didn't. My treatments were on a Tues. The Wed of the following week I went into work. I work in IT and my boses were good with what ever I set for my schedule. If any bug was going around I worked from home. Of course chances were I was already exposed by the time a person found out they were sick but I never got sick. Family and friends wer weclome to stop by as long as they were not sick or had been around anyone who was sick within the last week. My grandkids live about 20 mins away so it was rough not seeing them regularly. So we used Skype to stay in touch. It was great since I could see them and they see me. If they weren't sick we would visit the Sunday before my next treatment. 

After the R-Chop test showed the cancer was still hanging around so I went in for 3 cycles ot RICE with Stem cell to follow. For mulitple reasons I never had the stem cell but did do 2 years of Rituxan. 

During all of this I used an idea from a co-worker who fought cancer years ago. I created a newsletter. I would send one out after a chemo or any scans. I put togethr an email group for people at work who wanted to be kept updated. This way everytime I got back to work I didn't have to tell everyone who asked, what was going on.  I did the same for family and friends but I usually revised the news letter a little because it was family & friends. We did have to skip celebrating Labor day and Halloween. I was done with chemo mid-October so we were able to do Thanksgiving and Christmas. What was fun is our kids (we have 3) jumped in and did most of the food prep.

One big positive for all of this is that I got a LOT of reading done. 

Good luck with your adventure.

 

JeaniNOW1's picture
JeaniNOW1
Posts: 14
Joined: Oct 2018

Hi Lindary.  Thanks for your input.  Your comments about isolation give me another perspective to balance against my friends who are cautioning me to avoid being in a situation where "even one germ" could get to me.  ;-)  We do not have family close by, so the big holiday gatherings won't be tempting me, but there are a couple of hosted community award dinners/parties that I'd enjoy... but probably not worth the risk.  My hubby will just have to go without me.

Good idea to start the laxatives BEFORE the chemo. I will surely try that.

I can see that I'll be getting a lot of reading done.  And also, my hubby and I enjoy working on jigsaw puzzles, so there's always that for a quiet, relaxing pastime.

Cheers,
Jeani

po18guy
Posts: 910
Joined: Nov 2011

Being rather naïve at the start of all this, I worked 10 hour night shifts as an emergency first responder through my first two months of induction therapy. Worse than that, I guess, was that my job took me to hospitals, jails and private homes. Not a single infection of any kind. I do not believe I would do this again! 

Having had a stem cell transplant in 2015, and remaining on immune suppressants, I still wear mask and gloves in most public areas. Hand sanitizer is my companion (3M Avaguard is decent, as it also has lotion in it) and I am acutely aware of others coughing or sneezing - especially now in cold/flu season. 

A bit of paranoia is warranted, but one need not become a recluse.

ShadyGuy's picture
ShadyGuy
Posts: 321
Joined: Jan 2017

“Just because you are paranoid it doesn’t mean they are not really out to get you”  -  Woody Allen.

Germs are everywhere And they are the enemy.

JeaniNOW1's picture
JeaniNOW1
Posts: 14
Joined: Oct 2018

For the past few days I've been feeling this slight ache, on and off, in the area of my left kidney.  Not running a fever.  Feeling OK, just tired.  Eating well.  I'm 2 wks past my first chemo/immunotherapy sessions, so I expect that my white cells are pretty low.

I'm thinking maybe I'm not drinking enough water?  I've been drinking 2 liters daily.  I'm increasing it today... thoughts, anyone?

~Jeani

po18guy
Posts: 910
Joined: Nov 2011

You might call and have those readings from your last blood test checked, as they are an indication of kideny function. Flushing the kidneys with plenty of liquids is the only known way of keeping them healthy and happy. And the exercise you get from runnning to the bathroom can also be good...

Don't throw those drinks away just yet! Taste changes occur during and after chemo. Some foods you have loved all your life will not be appealing for a time.

JeaniNOW1's picture
JeaniNOW1
Posts: 14
Joined: Oct 2018

Hi Po18guy.  Looking at my latest labs from Oct 19, a couple days before my first chemo sessions, I see that my Hematocrit was at 43.8% (scale of 37-47%), but I see no reading for my Creatinine.  Latest number I can find for Creatinine was on 6/15/18 at .77 (scale of .60-.93). 

On Oct 19 I also had low Lymphocytes 8.7% (scale 20-45%) and high Neutrophils Abs. 7.4 K/ul (1.4-6.5).  Otherwise, numbers were all in normal range.

po18guy
Posts: 910
Joined: Nov 2011

I would ask nurse about the tenderness/pain you are feeling. Aches and pains can occur just about anywhere with both lymphoma as well as treatment. Scar tissue can form in and around the tumors and any growth or shrinakage can impinge on nerves in the area. Three yeas ago, I had lymphoma in my small intestine and the scar tissue still flares up and causes some tendeness from time to time. A can last month showed no evidence of disease, so it is part of the "noise" that we must deal with after diagnosis.

JeaniNOW1's picture
JeaniNOW1
Posts: 14
Joined: Oct 2018

I've got a call in to my doctor's nurse at the Cancer Center.  I'll see what she has to say about it.

JeaniNOW1's picture
JeaniNOW1
Posts: 14
Joined: Oct 2018

Nurse called back, my onc wanted me to provide a urine specimen.  Done.  Now wait to learn the results!

JeaniNOW1's picture
JeaniNOW1
Posts: 14
Joined: Oct 2018

Confirmed no UTI, yay!

ShadyGuy's picture
ShadyGuy
Posts: 321
Joined: Jan 2017

apparently my follicular lymphoma was present years before diagnosis and waxed and waned a few times leaving extensive scar tissues. My surgical report said my entire abdominal cavity was “ a mess” and full of scar tissue. It hurts from time to time. I just live with it. Pains in my chest, stomach and other areas occur regularly and doc says its “probably” scar tissue. Cardiology says my heart is normal despite occasional sharp chest pains. Fortunately my long time back pains went away almost immediately after cancer treatment. I just consider these pains my “new normal”. Acetomenophen helps a lot. Best of luck. Try not to worry and hang tough.

JeaniNOW1's picture
JeaniNOW1
Posts: 14
Joined: Oct 2018

I have no idea how long mine was lurking around, but per the PET scan, it's all located within my left lung except for one tumor that extended between my ribs, through the chest wall, beneath my left breast.  Shrinkage is already occurring there, thankfully!  So there's no kidney involvement.

lindary's picture
lindary
Posts: 626
Joined: Mar 2015

My follicular lymphoma was found by 2 different things. I had been having problems with breathing and energy. After several years of no change in my thyroid she had to adjust my meds twice that year. Then I complained about some odd bowel movements. She found a lump in my abdonmen that lead to a CT scan which discovered I also had pluerisy. But my thyoid was ok. It was just affected by the cancer. I ended up with a chest catheter so we could drain the fluid from around the lungs daily. (I had it for almost 4 months.) Then about a a week later I had my first chemo. Eight days later I had terrible constipation and ended up in the ER. Turns out the first round of chemo shrunk the mass in my abdomen, That mass had adhered to the bowel so it kind of tore a hole in the bowel when it shrunk.

Last year I learned, the hard way, that I really need to drink a lot of water. It was about 2 days after we got back from vacation and were relaxing and I wasn't feeling well. Then the constipation pain started and we went to the ER. Turns out that I was a little dehydrated but the constipation was the result of the scare tissue from the perforated bowel sugery. The surgeon reminded me about drinking water but also explained that since the bowel is a little more narrow in that spot I have to be extra careful Oh, and the side where that pluerisy drain was, I still get twings at times when I twist or lift stuff. Not every time but just enough to remind me of it. 

ShadyGuy's comment about scare tissue make me wonder it there is additonal scaring around my lung from the lymphoma cause pluerisy. Not going to worry too much on it. Whenever I get those twings I do very deep breathing exercises. If I ever have trouble doing them my DR will be getting a call from me. 

Kats Corner
Posts: 2
Joined: Oct 2017

Hi JeaniNow1. Haven't been on here in awhile. I also have Follicular Lymphoma and just completed 6 cycles of Bendamustine + Rituxan about the time you were starting. Very glad you have had little nausea so far...my experience very different. I had significant nausea for 2-3 weeks of each month and spent a night in the ER on day 4 of first cycle for uncontrolled vomiting and dehydration. Hopefully you will continue to have low nausea, but sometimes you can be affected cumulatively by treatment or the Bendamustine will spike some nausea out of the blue. Good idea to keep the anti- nausea meds on you. 

I went overboard in avoiding people and crowds initially and sanitizing anything I could see. I see it as a balancing act now- I want to stay safe but also don;t want to hate my life, so I still go to craft shows for instance, but I use sanitary wipes a lot and steer clear of sniffling coughing people. I try to always use sanitizer after using credit/debit machines. My doctor never gave me Neulasta though he monitors closely. I don't want to take any more treatment or drugs than I have to!

BTW I was diagnosed Stage 4 with bone marrow involvement with Lymphoma everywhere from neck to thighs...I just had my first post treatment PET/CT and am in full metabolic remission!!

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