Watch and Wait: I have posted before but now... - CLL Support

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Watch and Wait

Bryanb
Bryanb

I have posted before but now have all of my tests done. I wanted to see if the members here who know more than I do agree with my doctors recommendation of watch and wait? My age 47, good health,slight fatigue, platelets good. WBC slightly off. Alkaline Phosphate 216 normal is under 140.( not sure the cause of this but rising pretty quickly) Slight Anemia but barely under normal. Lymph nodes in stomach slightly enlarged. Lymph nodes in neck can’t be seen but slightly enlarged. Biopsy showed CLL in 5 of 6 removed nodes. CD 38 positive and unmutated. FISH just said within normal range for other markers. I think my Doctor is correct in watch and wait but wanted to see if anyone here thinks I should get a second opinion? I am studying and learning everyday but know their are many people with a lot more knowledge than me.

Thanks

6 Replies
oldestnewest

W&W sounds like a good plan.

AussieNeil
AussieNeilAdministrator

Read this pinned post to reassure yourself that based on what you have shared, Watch and Wait looks to be good advice for you:

healthunlocked.com/cllsuppo...

With regard to your raised ALL, some drugs and supplements can cause this, so it is worth reviewing possible causes with your doctor.

Neil

I think based on the limited information you provided watch and wait seems to be a reasonable plan. But that doesn’t preclude getting a second opinion. I think it’s always a good idea to see a true Cll specialist after being diagnosed.

Treatment protocols are rapidly changing and we may see people treating earlier in the future with the new agents, the thought being to treat some varieties of Cll before they mutate into harder to treat versions. A Cll specialist will be more up to date on any treatment protocol changes. Watch and wait remains the standard now for most of us.

Bryan: You don't indicate whether your medical provider is a 'CLL Specialist.' Please forgive an obvious caveat; but, it's worth repeating that not all doctors are equal in their knowledge of CLL. If he/she is a specialist then their opinion should be accorded greater confidence than if, say, you are being advised by a general oncologist (whose specialty is probably in solid tumors rather than in blood cancers).

In general, the longer one can wait to initiate the first formal treatment (at which point one's 'treatment naïve' status is lost ~ along with eligibility for some of the most exciting clinical trials) then more and more potential treatment options become available. This increased treatment availability is a result of the <extremely fast-moving developments> currently being unveiled for CLL. Every month or two a new therapy or combination of therapies has data released showing the efficacy, utility and 'adverse effects' from the novel agents being used to combat this blood cancer.

Just a few years ago the standard-of-care required chemotherapy ~~ because that was the only treatment. Since you describe yourself as a very young CLL-er in good health and are presumably mutated you would've been channeled to chemotherapy in a heartbeat. But, now we know that the standard-of-care for all but a very few is transitioning to the novel agents that target specific molecules rather than a drip of harsh chemicals into the entire body system.

None of this is meant to indicate that there was anything wrong with systemic chemotherapy in those times when chemo was the only option; rather, now chemo is rarely the first-line, go-to treatment.

Since none of us know what soon will be the empirically-demonstrated "best" combination- or mono-therapy for producing the most durable 'progression free survival', then if we can wait, we probably should delay treatment so as to retain eligibility for whatever soon becomes the newest, most powerful, standard-of-care.

CLL is one of the few diseases at this point in the development of new treatments, where if time is on your side because the disease is indolent then you should sigh with relief that most probably an even better treatment is just around the corner.

Caven

Bryanb
Bryanb
in reply to caven

Cd38 and unmutated. I think my Dr is a CLL specialist. I go to Duke and he is a hematologist/oncologist. He is also involved in leading their Car-T program. I really do feel confident in him but still like hearing from others.

Cllcanada
CllcanadaTop Poster CURE Hero
in reply to Bryanb

Danielle M. Brander, MD is the lead Duke doc, in CLL

I'm sure there are others

~chris 🇨🇦

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