Doctors

[loveRicky]

I just wondered if anyone had input or experience in having their CLL treated by an internist is osteopathy and general medicine, with some experience in hematology and oncology. I have NOT been feeling fully confident in my doctor...seems to be stating a lot of my symptoms are simply from old age. I just turned 79 on January 24th. Bloodwork shows low rbc, low hemo, low platelets, low absolute neutorphils, high mch, high mcv and high kappa light chain. Symptoms include: pallor, extreme fatigue, terrible night sweats, shortness of breath. I am on W and W for CLL. Any suggestions you might have would be very much appreciated. Have a great day!

[SofiaDeo]

A local physician is competent to administer treatment as recommended by a hematologist/oncologist, especially if that hem-onc is a CLL specialist. You are in the US, please join the nearest CLL Society support group (cllsociety.org) and ask members there who they like and use locally. Most of the CLL Society Zoom meetings nowadays are online, so you won't need to travel to get input. You likely would need to travel to see a CLL Specialist at least initially.

The CLL Society also offers a free, one time, online consult with a CLL Specialist but that doctor won't be an overseeing physician unless you decided to become their patient and go to their office for at least an initial consultation.

CLL is a strange critter, and it's hard to say if a non hematologist-oncologist physician would be giving optimal care. I know of one person seeing a former research MD to treat their CLL. As a former researcher, that person knows how to find & interpret statistics on the most recent information and has read the CLL specific literature and current trials for her. If a non hem-onc also did this, they likely could monitor and deal with an uneventful CLL variant. My hem-onc at diagnosis read up on CLL & gave me a lot of good information, but they were unaware of the "cutting edge" treatments. I found out about those going to a research facility with a true CLL specialist. The problem would be, if treatment isn't "smooth sailing", you may not get the fastest, most optimal problem resolution choices. This is the point of using a specialist, whether oncology, cardiology, dermatology, etc. With CLL, not knowing how to correctly treat certain side effects may, at a minimum, put you in the hospital.

If you are choosing an oral BTK treatment, these concerns are lessened, because adverse events and side effects generally are easier to manage/slower onset. I absolutely would not do an infusion treatment involving a MAB like obinituzumab or even rituxumab outside of a hematologist-oncologist setting, and only one with nurses/other staff experienced in giving these medications. Physicians and support staff are "specialists" in hem-onc because regular physicians and their staff generally haven't had the training to deal with any problems optimally. Even the oral BCL2 treatments may need hospitalization initially.

From reading your profile, it seems you have some other co-morbidities that are significant; even the oral BTK meds can affect kidneys and heart/blood pressure. Please seek out a specialist to oversee the local doc. I've had this done, so have others here. A good generalist welcomes input from a specialist. This is similar to your regular doc sending you to a dermatologist or cardiologist, following that docs recommendations, but sending you back to them if complications arise.

[loveRicky in reply to SofiaDeo]

Sofia...thank you for taking the time for such a long detailed response with good facts. I am scheduled for a fat pad biopsy on the 13th of February to check for Amyloidosis. Docs aren't sure if my previous chemos for Waldenstroms destroyed my kidneys or IF there are amyloid proteins causing the issue. I do have Stage IIIA kidney disease. There is a possibility that these proteins could be blocking my lymphatic systems thus causing the lymphedema. I will keep you posted, but hanks again for caring and taking the time to respond....gives me fuel to keep going.💕

[Jungster in reply to loveRicky]

Have you checked out the IWMF. They have so much information on Waldenstrom’s. They will be able to direct you to a support group in your area.

Wishing you all the best.

Tracey

[loveRicky in reply to Jungster]

Tracey....I have not checked out the IWMF website. They were so very helpful to me when I was diagnosed with WM in 2012. I will be sure to contact them for a CLL referral in my area. Thank you so much. Take care.

[SofiaDeo in reply to loveRicky]

LoveRicky, IWMF are not the people to get a CLL doc referral from. Tracey was referring to them being a good reference for WM problems.

In the US, the CLL Society is arguably the best resource for a CLL doctor. Its founder, Dr. Kauffman, built the site after his own CLL diagnosis. The physician list on the website may not be the most "up to date", but the local support groups WILL know who people are using in their geographic area. Just because a hem-onc practice says there is a doc there treating CLL, it's because that doc has decided to be the "go-to" for any rare CLL patients coming into the practice.

I remember I found this group some years in to my diagnosis. The so-called "CLL doc" I was seeing, was trying to tell me some side effects I was reporting, were not from the medication, even though those exact same effects WERE listed in the drug package insert. I started searching the internet for patient experiences with the medicine (admittedly, the medicine was new & not a huge amount of patient experience) and found this group. People here were also reporting the same things I was. And I discovered how to find a true CLL specialist, or at least a hem-onc actually reading up on the latest information.

It blew my mind that that hem-onc would just dismiss my concerns without bothering to double check the package insert. As a former pharmacist, I already had checked it, and KNEW that a certain percentage of people had reported these effects during the trials, or those side effects wouldn't be in the package insert! So I found me a new doc.

[lankisterguy Volunteer]

Hi loveRicky,

I agree with SofiaDeo

Short version is to sign up for this cllsociety.org/programs-and... to get an expert opinion on whether you need treatment soon.

Then use this: cllsociety.org/newly-diagno... and insert your state to find a list of CLL experts you may want to consult infrequently to advise your local doctor.

See: cllsociety.org/newly-diagno...

And this for peer support: cllsociety.org/programs-and...

Len (Co-Facilitator New York City CLL Society Support Group -Website: cllsociety.org Email: [e-mail] )

[loveRicky in reply to lankisterguy]

Thank you so much. I will follow up with all the steps you listed. I truly appreciate your help. WE know our bodies. I can ALWAYS push myself to do more, BUT now there is nothing left to push with. Something is wrong....other than old age! Anyway....who is old???? lol

[Phil4-13 in reply to loveRicky]

loveRicky, I'll be 76 in 1 month and I AM NOT OLD! 💪 I see a hematologist/oncologist and am very satisfied. My labs were showing lower #'s where I didn't want them and I was often feeling tired. After 4 1/2 yrs. In W&W, I began Brukinsa(zanubrutinib). In a week I felt more energetic and my spirit was glowing. If I had any questions about my doctor's ability, I would not hesitate to contact a CLL specialist. We are talking about our lives and I won't accept it's "my age".💃 I can't run, jump or quickly climb or descend stairs like I use to, but that is just being sensible not declaring myself old, just "older"!😊Sandra

[loveRicky in reply to Phil4-13]

Thank you for responding and an early Happy 76th Birthday. I agree....WE ARE NOT OLD!!!! I will search in my area and contact a CLL specialist. I totally agree with you...this is NOT my age. I am always positive, but I just feel "something isn't quite right with my body." I am so glad that the Brukinsa resulted in more energy and a glowing spirit for you...more than 1/2 the battle! Take care.

[BigfootT]

loveRicky, I'm certainly no expert here, but I've seen 2 non-CLL specialists in my short time with this disease and 1 CLL specialist (originally at MSK and she is now at Mayo). The difference in the understanding of this disease was stark. Honestly, the 1st "community" oncologist spoke to me about FCR and the 2nd "community" oncologist was more than happy to take guidance from my Mayo specialist. My PCM (an experienced internist) told me...."there's about 70 NHL's I don't really know much more than I learned at med school." While I think a good internist with current hematology knowledge can treat you, I would recommend a specialist guide that treatment.

Bigfoot

[LG1948]

I see a CLL specialist. I’m so happy I have her because there aren’t many. She does research as well as see patients. A friend of mine who also has CLL has a hematologist and he consults with the doctor that I see. So she does get the benefit of the advice CLL specialist.

I don’t know where I read this, but I believe it was a reputable source that said that if you see a CLL specialist, you will on average live in additional three years. It’s possible I read it on the CLL site.

[loveRicky in reply to LG1948]

Thank you too for sharing your CLL specialist information. WOW! An additional 3 years is possible with the knowledge of a CLL specialist. I will immediately begin checking for CLL specialist in or near my area (southern NJ).

[CoachVera55]

Yes we do know our bodies & as we age things do change but you know when you’re off. And no one has time to argue. Just politely find you a CLL Specialist especially with your age & comorbidities. I know doctors have it hard since its a numbers game but you need an expert for sure 👍🏾