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Follicular lymphona grade 2 Stage 4

bladeeagle

New member
Hi - Just introducing myself. Have been reading and researching here for a while and thinking it's probably time to start a thread now that my wife is about to start her treatment.

My wife has been diagnosed 9/2019 with follicular lymphoma grade 2 stage 4 at SCCA. We got on a clinical trial at SCCA with ixazomib and according to recent CT it's not working after 2 months. Now she's getting fluid in her lung (pleural effusion) and her onc asked for a PET scan to see if this is transformation and depending on the PET results we might start with BR(no transformation) or RCHOP(transformation).

Onc also mentioned R squared as a potential candidate (Not sure if we can still do R squared if there is transformation). She's feeling well and no B symptoms.

I'd like to get some opinions from the veterans here about pleural effusion, is this normal with FL? Or this suggests aggressive lymphoma (transformation)?

Also what about R squared compared to RB/RCHOP?
 

andym

Super Moderator
Welcome bladeeagle. I'm sorry that you and your wife have cause to join us. I'll write more tomorrow but for now I just want to say that everything you wrote sounds so familiar to me.

Trials that didn't work. Been there done that.
Pleural effusion due to disease while a trial wasn't working. Been there done that. Wasn't due to transformation.
R2, RB, and R-CHOP. Been there, done them, and they all worked for me.

Tomorrow I'll write more about my comparative experience with those three treatments.

And I'm sure she will get amazing guidance at SCCA. That is truly a great place. I'm sure this is a scary time and you are still adjusting to the diagnosis at this point. But there are many reasons to expect success and getting to remission.
 

andym

Super Moderator
OK, I'm back. Obviously you will get great advice on what works best from your doctors at SCCA. A good way to educate yourself to know the range of possibilities is to download the National Comprehensive Cancer Network treatment guidelines for b-cell lymphomas. To do that you go to nccn.org and register. You might need to say that you are a medical professional because you want the professional guidelines and not the ones for patients. The latter could be helpful but are not very detailed. The professional guidelines are very detailed and a new version was released in December. The guidelines are a consensus of a group of well respected specialists. From SCCA, the representative is Stephen D. Smith.

Sometimes something new and great might not have sufficient evidence yet and so might be left out of the guidelines because they are a consensus and have to rely on clear evidence. But with a pleural effusion you want something that has a high likelihood of working and working pretty fast. For instance, that may rule out trying rituximab or obinutuzumab as a single agent. Their rates of working are lower than the three regimens you mentioned and also tend to work slower than those other choices.

So that gets you down to three of the great standards: R-squared, BR, and R-CHOP.

I think you are right that if it is transformation then the choice is R-CHOP and if it isn't transformation then they will probably want to save R-CHOP for later. You can only go through that protocol once due to heart risks caused by doxorubicin (aka O for Oncovin). I didn't find R-CHOP too hard to get through because while it can cause low blood counts mine were well supported with Neulasta and with great advice here I was able to manage the other various side effects (nausea, constipation) very well. Perhaps the hardest and most unique part of R-CHOP is the prednisone which many of us call dreadnisone. It can really mess with your mood and sleep. But if you have to do it then it can be managed. There's a lot of experience with it on this forum.

BR is still chemo but way, way easier to get through than R-CHOP. For most people on this forum they have felt sickish on days about 3-6 of the 28 day cycle and experienced fatigue that got worse through process. But it is generally not that hard on blood counts and so you aren't as immune suppressed as on R-CHOP. And no hair loss. And no dreadnisone. Of the three chemos I went through it was the easiest. However, things are individual and we had one forum member who was seriously hammered by side effects during BR. That is unlikely but it can happen.

R-squared is not chemo and so I think a good question is whether it has lower rates of secondary cancers than chemo can cause. That could be a reason to prefer it. However, just because it isn't chemo doesn't mean it is easy. I had the two common side effects: neutropenia and pretty bad fatigue. The original protocol for R-squared was for 12 month-long cycles. My understanding is that almost no one finishes them (this is according to a fellow I talked to during a recent follow-up appointment). I made it 6 months before being hospitalized for a week of isolation due to severe neutropenia and the risk of infections that causes. After that we did one more infusion of Rituxan but no more Revlimid. But it is very effective and if it has a lower rate of secondary cancers then that is a plus. I did not see it in the guidelines for transformation.

All three of these worked very well and quickly for me.

While we always need to check for transformation, follicular on its own can grow quite quickly. It is sometimes called slow growing but mine was more episodic and varied between being stable for years near the beginning to exploding in a couple of months at other times. But it was always grade 1 or 1-2.

Please let us know how the PET scan turns out.
 

bladeeagle

New member
Thank you Andy for the detailed information. Much appreciated. Scary time indeed and I find myself stressed almost 24 hours a day. Our next PET scan is 1/9. Will post PET results here for sure.

We got the pleural effusion drained yesterday and she is feeling better today with less coughing. 2 liters of fluids are drain, color yellow. She is still not showing any B symptoms.

Again thanks for the quick and detailed response Andy. We'll see her onc 1/10 to discuss treatment options. Will post updates here.
 

andym

Super Moderator
I'm glad draining the pleural effusion was so effective. Mine didn't get to the point of draining mine but the coughing was bad enough that I actually broke a rib. And I have strong bones.

Good luck on the 9th and 10th.
 

andym

Super Moderator
This is a moderation note: I deleted a post from this thread that provided a link to a video about a for-profit treatment center that uses alternative treatments. While we could have a thread about alternative treatments, simply posting a link to a for-profit group is spam and not allowed.
 

zac495

Moderator
Welcome to our friendly forum. So sorry you have a reason to join our friendly bunch.

Andy gave you great, detailed information. IF it's transformation, that happened to me and I can speak to RCHOP and transplant. But one step at a time. I did not have any lung issues whatsoever - only back pain.

HUGS
Ellen
 

bladeeagle

New member
Thanks everyone for the friendly and comforting responses. I am so glad that I found the amazing group of people here.
 

earthling

New member
Welcome bladeeagle. I think it's wonderful of you to join, and not just because of your DW, but also because of yourself. Being a spouse of a lymphoma patient, I know all about that "24h a day stress" you mentioned. Hang in there. Talking to a friendly bunch that knows exactly what you are talking about and what you're going through helps immensely.
 

edl

Member
A small correction. Andym is very knowledgeable, and rarely wrong. The "O" in CHOP is vincristine, also called Oncovin.

From Google: CHOP - An abbreviation for a chemotherapy combination that is used to treat non-Hodgkin lymphoma and is being studied in the treatment of other types of cancer. It includes the drugs cyclophosphamide, doxorubicin hydrochloride (hydroxydaunorubicin), vincristine sulfate (Oncovin), and prednisone.

You started this thread by saying that your wife has FL, grade 2. (Stage 4 sounds very ominous, but try not to worry about that. FL is a systemic disease and usually widespread at the time of diagnosis. So saying stage 4 FL is absolutely different than stage 4 colon cancer or stage 4 lung cancer.)

My understanding is that CHOP would not be required unless she has transformed to DLBCL. CHOP is for more aggressive lymphoma. I don't believe that R-squared would be offered for DLBCL.

If it is still FL, and if Bendamustine is selected, here is a thread that discusses what others in this group have experienced: http://forums.lymphoma.com/showthread.php?t=55952
 
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bladeeagle

New member
Starting R+R next week

So PET scan shows no transformation which is good. Does show progression between now and last PET scan(2 month ago) which explains the pleural effusion. So now we know Ixazomib trial did not work.

We had a good discussion with our doctor today and between the options of B+R and R+R, We decided to go with R+R. Treatment will start next week.

Thanks everyone for your kind replies. I really find strength (my wife as well) through reading the helpful responses here.

Like Andy mentioned, The R+R will be 12 months. On to the first one next week!
 

limeylass

New member
Welcome to our forum where we all didn't intend to be but life's journey brought us here.
Andy answered your question so well. SCCA is a great place - you are fortunate to be close to them. Keep us posted
BEst - Annette
 

andym

Super Moderator
Yes, I should have said the H for hydroxydaunorubicin.

Good luck with the RR treatment. After the first month of getting R weekly, you aren't in the clinic very much. So life goes on pretty much as usual but just with a bit of tiredness.

It really worked well for me and I hope she gets a quick response that makes the pleural effusion go away.
 

bladeeagle

New member
I am wondering why they didn't recommend wait and watch since she didn't have any symptoms?
She is considered high tumor burden. Now with pleural effusion we all agree treatment is needed.

Before the pleural effusion another doc said watch and wait is still an option. Our current doc recommended treatment first time we consulted with her. So it also depends on the doctor I believe.
 

bladeeagle

New member
First dose of Rituxan

Had our first dose of Rituxan today. Took around 8 hours. Wife had some reactions to Rituxan (chills, swollen and red face, rash).

We'll pick up revlimid tomorrow.
 
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