Confused

[Grannymadeit]

I am horrid at sharing my history and/or feelings whether it be here in writing or in person, so please bare with me.

I was diagnosed with CLL in 2008 and by Oct 2009 my ALC had increased to 30 and my spleen was enlarged. My RBC was at 4.14 and my HG was at 12.7. My platelets were 130. A BMB showed 93% impacted with lymphocytes. I started treatment with FR and after 6 mo. my numbers were quite decent.

Fast forward to now. My ALC is not too high at 17.31 and my ABN are at 2.8. Not too bad. However, my platelets have been bouncing around 100 for months and my RBC is at 3.2 and my HGB is bouncing on both sides of 11. My MCV has been slightly over 100 for months. I have enlarged lympth nodes in my abdomen and lungs, and a couple very small ones externally. My Oncologist is somewhat dismissive of the RBC and platelets choosing to focus more on overall lymphs. I live in the Pacific Northwest in an area without a great deal of health care, let alone specialized healthcare. I drive 120 miles to see the oncologist - have been seeing someone every 2 months for quite a while.

I have been fighting worsening fatigue for sometime now, but to clarify, I also have RLS (severe), have been diagnosed with sleep apnea but after losing 30 pounds found the CPAP machine to be more of a nuisance than a help. My blood pressure tends to run low and I am not currently getting a lot of exercise following a fall that crushed my T12 vertebrae. Oh, small detail, I am 80 years old. I do not have diabetes or heart disease.

I also deal with a lot of stress from my oldest daughter (now living with me) who is struggling with what we called a nervous breakdown in the olden days, and a disabled grandson. My husband is a T9 paraplegic currently in a rehab about 120 miles from here.

That's it. Small snapshot of my reality. My confusion comes from not being very well informed re: my CLL. I haven't had any testing other than blood work in quite a while. I know I am trisomy 12 but have no idea whether I'm mutated or unmutated. Somehow that test hasn't been run. I'm sure I should have another FISH and probably a Flow cytometry as well. A CT scan might be helpful also. Should I press my doctor to run more tests or just wait and wait and wait.

Thank you for listening. I know I would be less anxious with more knowledge.

Granny Made It.

[Spark_Plug]

A lot has happened in the CLL world since 2008. I'm going to have others who have more experience fill you in. But, I think you'll feel a good deal of relief.

Welcome 🙂

[Grannymadeit in reply to Spark_Plug]

Thank you Spark_Plug - I am aware of the myriad of different treatments available now. Not proficient in any of them, however. When I get to the point of needing treatment I will do more research then. I know just enough now to be dangerous.

[Classicaljazz]

Perhaps consider using CLL Society’s free telehealth online 2nd opinion Expert Access™ Program which is great for rural residents in the U.S.-- see cllsociety.org/programs-and...

And, since you already drive at least 2 hours for medical care, you might consider seeing or getting a telehealth/Zoom consultation with a different Northwest US oncologist who will really listen to and address your concerns, one of the CLL specialists listed in the CLL Society website's CLL Healthcare Providers Directory:

Washington CLL Healthcare Providers

Virginia C. Broudy, MD: Hematology/Oncology Clinic at Harborview, University of Washington, Seattle

Arvind Chaudhry, MD: Medical Oncology Associates, Providence Health Services, Spokane

Solomon Graf, MD: VA Puget Sound HCS / University of Washington, Seattle

Nadia Khan, MD: Swedish Cancer Institute, Seattle

David Maloney, MD, PhD: Fred Hutch in Seattle

Ndegwa Njuguna, MD: Northwest Medical Specialties, Tacoma

Krish Patel, MD: Swedish Cancer Institute, Seattle

Mazyar Shadman, MD: Seattle Cancer Care Alliance, Seattle

Chaitra Ujjani, MD: University of Washington School of Medicine, Seattle

Oregon CLL Healthcare Providers

Jeff P. Sharman, MD: Williamette Valley Cancer Institute, Springfield

Stephen Spurgeon, MD: Oregon Health Sciences University, Portland

[Grannymadeit in reply to Classicaljazz]

Thank you so much for that info. Unfortunately, I've already used my free consultation - Met with a Dr. Choi from San Diego.

But thank you for the other names. I've been interested in Dr. Spurgeon for some time since my youngest daughter lives in Portland. I have another oncology appointment at the end of this month, I'll see how that goes and proceed from there.

[Melina26]

I was also diagnosed while living in the PNW in 2008! My counts got worse over the following years (but not bad by current standards) and the oncologist was already talking chemo which was all they had at the time. He was wrong though. I moved to Virginia and began taking 5000 IU of Vitamin D daily. My counts improved and now, sixteen plus years later, I still haven’t had treatment.

I feel like driving that distance every two months is hard for you. Maybe your local primary could do the bloodwork and send it to the oncologist? And if you aren’t taking a big daily dose of Vitamin D, please start. The gloomy days are coming.

[Grannymadeit in reply to Melina26]

You are correct, the drive is getting difficult. I have been interested in Vit D3 for some time now, and do take a supplement, but not nearly that high of a dose. I shall increase my dose and hope it helps! My D3 levels check out ok but I'm not sure that's the whole story.

[Melina26 in reply to Grannymadeit]

It is a spectacular part of the world and I miss the good feeling in the air, but the sunlight is puny for a large part of the year and at our age, it is hard to make D from sunlight anyway. Even with the large dose of D I am taking, my levels are only mid-range. When my husband was a bit low, they had him taking a dose of 50,000 weekly! Also, maybe you could look for rides to those appointments and ask if you can’t space them more. Good luck!