Brand new with Follicular Lymphoma - hello!

JeaniNOW1

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

U mentioned anti-emotics. R U recvg Neulasta or biosimilars?

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

 

 

 

 

 

po18guy

Hello!

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

twowheels said:

U mentioned anti-emotics. R U recvg Neulasta or biosimilars?

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

 

 

 

 

 

Neulasta? etc.

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

 

JeaniNOW1

po18guy said:

Hello!

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!

Alternatives to water

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

JeaniNOW1 said:

Alternatives to water

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

Neulasta

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

lindary

follicular

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

JeaniNOW1 said:

Alternatives to water

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

Making water more interesting

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

JeaniNOW1 said:

Making water more interesting

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?

Haven't heard of that one...

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

JeaniNOW1

po18guy said:

Haven't heard of that one...

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

Stur powdered drink

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!