Should I go to a CLL specialist?

[sivasvati]

I posted a couple months ago about my family history with CLL but I have found out since then that it is more extensive than I knew. If I am diagnosed with CLL I will be the fifth generation in a row to have CLL. I met with an oncologist hematologist a month ago and they conducted a flow cytometry and FISH panel. It was determined that I have a high count 3.5 MBL population with a 13 q 14 deletion. My doctor has decided to monitor my numbers every six months since with my family history it is only a matter of time before it progresses to CLL. He offered to refer me to a CLL specialist if I wanted, but I decided to wait since it was almost the holidays. My question is should I go ahead and meet with a specialist or should I wait until if or when my numbers increase to an actual diagnosis?

[studebaker]

I would ask to be referred to a specialist. Especially with your family history would be a good idea sooner rather than later.

Dana

[SofiaDeo]

If it's convenient, I would see a specialist sooner, but not if it was a major inconvenience. I would also verify an expanded FISH panel was done, and not just the CLL one that only looks for a specific set of CLL mutations.

[Pearlpink]

if you have the opportunity to be referred to specialist, I would do it. I was unable to see people at the tertiary centre until I became worse so grab it with open arms. My first consultant used to suck the optimism out of me, and the specialist I then saw was wonderful!

I don’t know whether we had 5 generations, but we definitely had 5 blood cancers in two generations. I saw a geneticist, but they have just kept me on their books as they said their knowledge about the genetics for CLL in families like ours is still low, but they expect to advance that knowledge in the next few years.

Good luck! 🤗

[Ibru]

The answer to that question is always yes. It could take a long time to get it once you need treatment. It is better to establish yourself as a patient now.

[Katie-LMHC-Artist]

In the US I waited 6 months to see the top CLL Specialist/Researcher at one of the best cancer hospitals in the country. I wanted to see a specialist that was also a researcher. I knew I would be in good hands with him. As others have said, it probably would be helpful to establish the relationship sooner than later with a specialist. Take care!

[DriedSeaweed in reply to Katie-LMHC-Artist]

I had this problem once with a disease specific rheumatologist.

One thing that helps is flexibility. I was told 5 months to see my current CLL specialist at DFCI. She only does clinic one day a week and research the rest. I told them if they get a cancellation I would come immediately. Of course, someone canceled and I got in within 4 weeks.

[Katie-LMHC-Artist in reply to DriedSeaweed]

You must have Dr. Jennifer Brown. I was told 6 months wait for her and then I was asked if I wanted to see Dr. Mathew David’s. I was able to connect to him sooner. I like him. I also have a local hematologist. He is closer to where I live. He also is a researcher. He listens to me and can be humorous! The nursing staff are great with my local hematologist . They will get back to me same day with an answer to a question or concern. It would be nice to beat the Jets today! Glad I’m home watching the game! Shoveled snow earlier. Will go back out during half time!

[DriedSeaweed in reply to Katie-LMHC-Artist]

Yeah I am on a trial she designed and handed off to a colleague.

I live next to the airport in Maryland so I make a quick flight up every couple months.

I have a local hem-onc but he does more car-t and transplant. I use him if I have an issue locally. I haven’t seen anyone at the CLL conferences that has a practice near me. I will keep my eyes open though. I went out of my way for good insurance last year and this year. Not sure if I can keep this up forever.

[Katie-LMHC-Artist in reply to DriedSeaweed]

I hope you are able to find someone closer to you that is a specialist. When I was first diagnosed my brother-in-law encouraged me to go to Dana Farber. He is a retired doctor who worked at the adjoining hospital, Children’s Hospital. He knew the doctors at Dana Farber and suggested I see the best! I’m sure you looked at providers on the CLLSociety website. I was told Dana Farber will only doing Telehealth with people in state. I utilized that a few times. I hope you find a specialist in your state in the future. Take care!😘

[leftysfsl1945]

You were put in a WATCH and WAIT "program" . Before engaging an oncologist/hematalogist read THE METABOLIC APPROACH TO CANCER by Dr. Nasha Winters.

Also, what is your White Blood Count?

Did the doctor perform a Lactose Hydrodenase test?

What is the status of tp53?

I have CLL (over 2 years) and I am no doctor, but seems like more lab results are needed for a good evaluation.

I would add a Naturopathic doctor with cancer treatment experience to your team.

Maybe ask Dr. Winters office for a referral.

[AussieNeil Administrator in reply to leftysfsl1945]

Nasha Winters believes that cancer is a metabolic disease per her book. While many people eat poor diets and could well improve them to reduce their risk of primary secondary cancers as well as improve their overall health, once you have CLL, trying to eliminate the DNA damaged CLL cells through dietary changes is extremely challenging, particularly given CLL also cripples our immune system. See: healthunlocked.com/cllsuppo...

Gaining an appreciation of the importance of nutrition to support improved health is worth the effort, provided we do engage CLL specialist as you mention, because CLL researchers have made dramatic improvements towards improving our changes of living out a normal life expectancy. Unfortunately, as this article notes, "several recently published studies suggest that substituting conventional anticancer therapy for alternative treatments is associated with shorter survival." (my emphasis)

cancertherapyadvisor.com/fa...

According to rationalwiki.org/wiki/Nasha...

"Nasha Winters is an American acupuncturist, naturopath, anti-sugar campaigner and low-carb advocate who promotes the ketogenic diet as a therapy for cancer.

Winters has no scientific medical training. She received her Doctorate in Naturopathic Medicine from Southwest College of Naturopathic Medicine in 2003.[2][3] Winters believes that cancer is a metabolic disease.[4]

:

The idea that sugary foods specifically feed cancer cells is completely wrong,[11] and there is no scientific evidence that a ketogenic diet can cure cancer."

Of note, CLL cells preferentially metabolise fats, not glucose for their energy needs as covered in this post: healthunlocked.com/cllsuppo...

When you go to Natasha Winters' website, you immediately get a banner ad, promoting recommended supplements. Three of the five products shown are promoted for their immune boosting properties. From my research, any immune boosting supplements should be avoided when we have CLL, because the supporting evidence for them almost invariably quotes increased lymphocyte activity and propagation - the last thing we need when we have CLL.

Neil

[leftysfsl1945 in reply to AussieNeil]

Well, many people do not consider Wikipedia an authoritative source because of its often times biased presentation of "facts".

The reality is that a lot of people want a solution from the pharmaceutical companies and DISS any other persons or entities with a different approach to health.

Many Naturopathic doctors (including mine) will tell you that smartly COMBINING conventional(allopathic) and Naturopathic approaches leads to good outcomes for CLL and other cancer patients.

I highly recommend all CLL patients to buy a copy of NATUROPATHIC ONCOLOGY: An Encyclopedic Guide for Patients & Physicians by Dr. Neil McKinney

Also, I have had GREAT success with NFH EGCG, Vitamin E(special formulation from CARLSON) and several other PRIMARY AGENTS that many refer to as "vitamin supplements".

My WBC has dropped over 50% from my initial diagnosis.

LDH has dropped from 431 to 150.

Less than a month after starting EGCG, Vitamin E and others (i.e. Quercetin) my (horrible) night sweats ceased and I stopped losing weight.

I had dropped to 167 pounds from 192.

I work out 60 to 90 minutes 5 days a week.

My Hematologist has extended time between visits from 3 months to 6 months.

No pharmeceutical drug intervention.

So, if you want to, keep following the CLOWNS who stupidly conduct EGCG trials for CLL without Vitamin E, be my GUEST.

Currently, I have no symptons.

You could learn a lot from Dr. McKinney...if you want to.

Peace

[Vinweesel2023]

I was diagnosed with MBL in December of 2016 and did not start treatment until March of 2023 when my numbers were off the charts. I am second generation with CLL. Apparently the doctors do not start treatment until stage 4 CLL for whatever reason. The doctor monitored my blood work starting with once a year and then every six months and then every three months. For my own peace of mind I had my family doctor run the blood work every three months long before the cancer doctor.

[AussieNeil Administrator in reply to Vinweesel2023]

Unlike other cancers, with CLL, when to treat is not decided on staging. I was diagnosed at stage 4, then lasted 11 years in watch and wait. This post explains the triggers for starting treatment.

healthunlocked.com/cllsuppo...

Neil

[Vinweesel2023 in reply to AussieNeil]

This oncologist I have said she would not start treatment until I was stage 4. I am not happy with her at all. I feel all she wants to do is hand out the meds and whatever happens after that is an Oh Well.

[Hoffy]

Yes you should go, Be well, Hoffy