When is it time?

[Rico49]

This is more about my experience with W&W and hopefully it might help others who might be on watch and wait. Everyone is different and as we know, deciding when to start treatment is the Doctors call based on several parameters.. My specialist is Dr Javier Pinilla at Moffitt Cancer Center in Tampa Fl. He is a internationally recognized researcher who was involved in the V+O Phase 3 study with 420 +patients so he is pretty credible.

So after 7 years on watch and wait and one false start last October I am starting my V+O treatment on June 13th. The information I have found on this site and and comments from many of you have been very helpful in preparing myself . Thank you!

My brief story: In Sept last year a bone marrow biopsy was done :my WBC was 20.3,Platelet 106, hemoglobin 11 and 80% involvement in my marrow, and a cat scan showed lymph node enlargement - the largest about 1.5 inches. Spleen and liver enlarged but not too bad.

Dr in NC started me on Calquence. When I got back to Florida I went to Moffitt in Nov and Dr Pinilla basically said I was started too soon. Dr Pinilla stopped my treatment immediately as my ANC had crashed to 0.14 in only one month.

He said he had patients with WBC above 200,000 that weren't in treatment. The 80% involvement didn't bother him. He became concerned when the involvement in the marrow reached 85-90 %. He wasn't concerned at all with my enlarged lymph nodes. My Florida Dr always said he would do bone marrow biopsies when my platelets got in the 70's. I was over 100 in September.

So, I was on watch and wait again from Nov 2022 till May 4,2023 when we did another marrow biopsy . Infiltration now 85-90%. WBC 27.1( from 3.6 in November). Platelets 81. Hemoglobin- 9.3 and my lymph nodes are much larger. ANC only recovered to 1.3 in 6 months. I am now starting V+O treatment on June 13.

This doesn't mean the same for everyone. Just an example--When I saw the 80% infiltration in Sept I thought , boy we better start.

Dr Pinilla didn't think so nor did my hematologist in Naples ,with 30 years experience, think it was time in November. . They think it is now time. I don't believe the Dr in NC was fully versed in watch and wait.

I hope this gives people recently going into watch and wait some insight and realize just because your WBC is up or you have some lymph node swelling or spleen enlargement that it's time to start treatment. Be sure your Doctor is well versed in watch and wait and you understand what criteria he/she looks at. Be sure you have a specialist in the loop. I watched a video a while back by a Dr at Dana Farber who explained watch and wait. She also called it watch and worry!😇 They claim that 30-35 % of the people diagnosed with CLL don't ever get treated. The problem is they can't tell you if your one of the 35%. I think that's one of the reasons why we have watch and wait.

[AussieNeil Partner Administrator]

I had a similar experience to you with regard to starting treatment. There's really no excuse for doctors if they decide to treat ahead of the optimal time, because there are guideline documents they can follow as explained in this post: healthunlocked.com/cllsuppo...

The iwCLL guidelines used internationally were a spin-off derived from the US NCCN guidelines, with Dr Bruce Chesson initiating both guideline documents. Basically if your doctor advises treatment for other than the reasons outlined in these documents, they need to provide a good explanation as to why and perhaps a second opinion is called for. CLL being a chronic illness, there's usually plenty of time for a second opinion and those in the US can have a free video consultation with a CLL specialist thanks to the CLL Society's Expert Access Program. cllsociety.org/programs-and...

If I had been started on treatment based on my chronic severe neutropenia, I would have missed out on nearly 11 years of watch and wait. Thankfully, my specialist was familiar with the iwCLL guidelines and my long watch and wait enabled me to avoid the older "chemo" treatment of FCR and I'm into my fourth year of remission after 14 cycles of treatment with acalabrutinib, venetoclax and obinutuzumab. My triggers for starting treatment were falling platelets, which dropped into the low 50s and falling haemoglobin, which was approaching 10.0. The latest (2018) version included a change that alowed watch and wait to be continued if low platelets trended below 100, provided they remained stable.

There are around 20 different chronic B cell lymphomas and about 200 different blood cancers. Oncologists specialise in solid tumours and can take a standard approach to treating all chronic leukaemias/lymphomas, getting nervous when the WBC count approaches 100. That means they tend to treat early, which can mean a shortened life expectancy should you run out of treatment options, because your CLL has become resistant to all available treatments.

Sorry for the long reply, but this is a very important topic. V and O is a good treatment option, so you should do well. Obinutuzumab cured my chronic severe neutropenia, so I hope that's your experience too.

Neil

[Rico49 in reply to AussieNeil]

Thanks Neil. I have a concern about neutropenia myself since my initial reaction to calquence was to see my anc go to . 14 after only one month.I know they have things to help.

For me I was in watch and wait 6 years and no one told me about it. They would just say it's not time yet to treat see you next year.

Too bad I didn't know about this site 6 years ago. That's where I learned about W&W.

Was your first treatment A/V/O after 11 years W&W?

Thanks.

[Snakejaw in reply to AussieNeil]

I’m currently facing treatment in the near future with numbers trending the wrong way, but not shockingly high/low yet. I guess my question is whether treating earlier could result in deeper remission periods vs waiting for more dire circumstances? There’s probably not enough evidence with novel treatments yet, but it’s something that’s on my mind.

[AussieNeil Partner Administrator in reply to Snakejaw]

It's a good question and there have been trials where people have been treated earlier than is currently recommended, with particular focus on those with complex karyotype and other poor markers. What needs to be proven is whether the risk of adverse events outweighs potential benefits. I suspect treating earlier might perhaps reduce the damage to our immune system by our CLL - perhaps reversing to some extent hypogammaglobulinemia (low immunoglobulins), T cell exhaustion and the reversed CD4:CD8 ratio. Our bodies otherwise seem to recover well from combination targeted therapies, so it seems that they can be repeated, though perhaps earlier treatment might reduce the incidence of those with permanently low blood counts in platelets, red blood cells and neutrophils.

Neil

[PoisonDwarf in reply to AussieNeil]

The $64 million dollar question Neil! Increasingly with the new treatments available I wonder if starting treatment at the earlier end of the guidelines would help enable the immune system to clear out malignant cells rather than waiting until it has little in reserve & becomes overwhelmed on all fronts. I was planning on waiting for the bispecific antibodies but not sure I have time. I do recall being in the middle of full blown anaphylaxis & the Docs wanted to intubate due to concerns over my breathing & throat closing up from the swelling. Something in me said, I think this maybe asthma not allergy, give me a nebulizer with the good drugs & time to find out if I can breath through this. I wasn’t intubated. I found out later that intubation when the underlying problem is an asthma attack can have far ranging unintended consequences. My quiet inner voice is getting more insistent. 🤷🏼‍♀️ Time will tell.

[cajunjeff]

I’m no expert for sure, but I think it’s hard to say you started treatment too early. The decision to treat is typically driven by the iwcll guidelines, which are guidelines, not hard and fast rules. Cll specialists, to my understanding, use their instincts and experience, in combination with the guidelines, to decide when to treat.

According to the guidelines, platelets below 100, hemoglobin below ten and extensive lymphadenopathy are among the many guidelines used to trigger treatment. Only one guideline need be met. And once again, they are just guidelines. Reasonable expert minds can differ, particularly in close calls that can go either way.

It’s also important to note that the watch and wait paradigm is currently being reconsidered in light of the new novel drugs. While it’s generally accepted that treating cll early with chemo provides no survival advantage as compared to waiting. Thats not as clear with the new drugs. It’s arguable treating early with new drugs might improve survival, I don’t think they know yet.

In your case, you had platelets near 100, low hemoglobin and, it sounds like, worsening lymphadenopathy. Some doctors don’t like to wait until we are very ill to treat. I think the tempo of your cll would be an important factor too, that is, have you been hovering around 100 platelets for years or has there been a steady trend downwards? If your platelets and hemoglobin were trending down at a rate that suggested you would have even lower platelets and hemoglobin in a couple months, I can see why a doctor would start treatment. If you were complaining that your nodes were troublesome for you, that could be a factor too.

The fact that within the year your platelets had dropped below 100 and your hemoglobin below ten seems to support a conclusion that your NY doctor foresaw your numbers dropping fast. I don’t see how he was wrong. But I also think waiting a few more months would have been okay too.

As an aside, my numbers looked like yours do now when I started treatment. It was a serious bout of AIHA that triggered my treatment. Might I have been spared AIHA had I treated earlier? Probably so. Did my doctor make the wrong call? Perhaps only in retrospect. I think the decision he made at the time, with the info he had, was well within his discretion.

I hope your treatment goes well. I tried to add venetoclax to my calquence and I couldnt tolerate it. Others do fine. Im on calquence only right now and its worked well for me the last few years. Good luck to you.

[Rico49 in reply to cajunjeff]

Thanks Cajun jeff I have struggled with much of what you have brought up. I put my trust in my doctor at Moffitt who has been published 100 times and is nationally and internationally recognized in chronic leukemia.

In my cas I got messed up because of covid. If I had not gotten covid I would not have ended up seeing a hematologist in NC. and my doctors would have ended up where I am now . I was getting blood tests in Oct and April so they would have seen the decline.

When I saw the Dr in NC my WBC was 20.5, plat-106, hemoglobin was 11 hardly meeting the guidelines to treat and I was feeling ok. Covid and this Dr scared me and I over reacted. Anyway I learned Calquence probably wasn't the right drug for me. It only cost me $4000 to find that out.

[cajunjeff in reply to Rico49]

It’s good you have a doctor you like and who is very experienced. We are all different for sure in what treatments work for us. I was doing great on calquence and added venetoclax to try to get mrd negative and in a remission. Venetoclax caused bad neutropenia for me which was somewhat manageable with neupogen injections. It was my stomach problems that caused me to quit and go back to calquence monotherapy.

Platelets below 100 are, in and of itself, a trigger for treatment under iwcll guidelines. I was just offering a lay person educated guess that your first doctor started treatment because you were right at 100 with platelets and likely soon to be under 100. I don’t see any large distinction between platelets of 107 and 100. Given range of error for such testing, those are about the same. It’s not like platelets at 107 are fine and 99 not, 100 is juts a guideline they landed on.

I don’t see the treatment guidelines as being something for most of us, because cll is generally slow growing, that one day we are fine and don’t need treatment and the next day we suddenly need treatment right away. I see it more as a window to start treatment that can be open many months for some.

Calquence and venetoclax, together or individually, are great options for us. Even though venetoclax was hard on me, I still consider it an option if I become resistant to calquence. Hopefully Venetoclax will get yiu into a long, depo remission. If not, calquence might yet be an option. Neutropenia can be managed. With your history of it, I am sure your doctor will be watching it closely. Adding obinutuzumab can add additional toxicity as well, but obinutuzumab with venetoclax helps give cll a one-two punch that makes the risk of additional side effects worth it for many.

I think V plus O is a great option with many people getting in remission from it. Good luck. Dont get discouraged if you get some side effects or bumps in your treatment road. I think thats just par for the course for lots of us. Having a top doctor, as you do, will help for sure.

[Angie4now]

Hi Rico49,

Thanks for sharing. I’m on W&W, last year we decided to make Florida our primary home, however, I still fly back to NY to see my CLL specialist whom I love. Dr. Lamana, highly recommended Dr. Pinilla @ Mofit. I have to forward my medical records and eventually schedule an appointment with Dr. Pinilla. I just hate driving in Florida, speed limit is 70 & everyone is doing 80 plus.

Best,

Angie

[Rico49 in reply to Angie4now]

Thanks- I think it's more like 90 mph😂. Moffitt is a great facility Good luck!

[Angie4now in reply to Rico49]

Thank you! Good luck to you

[Big_Dee]

Hello Rico49

Great write up. Everyone is in Watch and Worry, even the 30%-35% who never need treatment, same goes for those who have had treatment. 😂

[Rico49 in reply to Big_Dee]

Thank you. I think some of the responses people have made around the question of "when" are very credible.

[lisakc1]

My question is, does earlier treatment reduce the risk for secondary cancers, skin cancer, prostate cancer, breast cancer? it makes sense to me that the risk for encountering these conditions may be higher the longer the watch and wait timeframe extends. Balancing the risk/benefit scenario seems very precarious imo.