I have been diagnosed with cll since 2004 approx. No treatment yet... WBC starting to move up more . Used homeopathic methods. Question...what is no. 1 reason doctors start to treat? What is currently top cocktail in the u.s if need? I have kaiser insurance, is there recommendations to seek best cll doctors in los Los Angeles...vicinity? My oncologist is wonderful but should I seek more of a CLL expert? Thank you all, be well!
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Welcome and these are the iwCLL accepted clinical indicators for initiating treatment. There is no number 1 as such and it’s often a clinical decision based on the factors below plus how the condition is impacting on functioning and quality of life (sometimes called constitutional symptoms).
‘Active disease should be clearly documented to initiate therapy. At least 1 of the following criteria should be met;
1. Evidence of progressive marrow failure as manifested by the development of, or worsening of, anemia and/or thrombocytopenia. Cutoff levels of Hb <10 g/dL or platelet counts <100 × 109/L are generally regarded as indication for treatment. However, in some patients, platelet counts <100 × 109/L may remain stable over a long period; this situation does not automatically require therapeutic intervention.
2. Massive (ie, ≥6 cm below the left costal margin) or progressive or symptomatic splenomegaly.
3. Massive nodes (ie, ≥10 cm in longest diameter) or progressive or symptomatic lymphadenopathy.
4. Progressive lymphocytosis with an increase of ≥50% over a 2-month period, or lymphocyte doubling time (LDT) <6 months. LDT can be obtained by linear regression extrapolation of absolute lymphocyte counts obtained at intervals of 2 weeks over an observation period of 2 to 3 months; patients with initial blood lymphocyte counts <30 × 109/L may require a longer observation period to determine the LDT. Factors contributing to lymphocytosis other than CLL (eg, infections, steroid administration) should be excluded.
5. Autoimmune complications including anemia or thrombocytopenia poorly responsive to corticosteroids.
6. Symptomatic or functional extranodal involvement (eg, skin, kidney, lung, spine).
7. Disease-related symptoms as defined by any of the following:
* Unintentional weight loss ≥10% within the previous 6 months.
* Significant fatigue (ie, ECOG performance scale 2 or worse; cannot work or unable to perform usual activities).
* Fevers ≥100.5°F or 38.0°C for 2 or more weeks without evidence of infection.
* Night sweats for ≥1 month without evidence of infection.
Hypogammaglobinemia, or monoclonal or oligoclonal paraproteinemia does not by itself constitute a basis for initiating therapy. However, it is recommended to assess the change in these protein abnormalities, if patients are treated. Also, patients with CLL may present with a markedly elevated leukocyte count; however, leukostasis rarely occurs in patients with CLL. Therefore, the absolute lymphocyte count should not be used as the sole indicator for treatment.’
bloodjournal.org/content/13...
It’s always advisable to seek a second and more CLL skilled opinion when treatment is being discussed. The treatment will be dependent on your genetic profile, age, general health and financial resources but Ibrutinib is often the therapy of choice first line now in the USA.
I’m from the U.K. so will leave it to others to recommend specialists.
Best wishes,
Newdawn
Thank you so much... my hope is the cure is soon for ppl suffering now and better meds with less side effects come quickly.
Be well!
Has your doctor recommended treatment, and if so based on what. You haven’t given any indication of symptoms, or lab results. Some Kaiser facilities have hematologists who are familiar with CLL and some will refer you out of network, at least for a consult, especially if they can’t provide a doctor familiar with treatment for your diagnosis. I would ask about your rights to an outside consult. I doubt that you will find a Kaiser in the LA area that would refer you out of network for more than that.
Is your doctor a general oncologist or a hematologist? You need a hematologist. Sending a chat. Click on the orange circle sat the top of the page.
Dr visit today... I will get back to you
Oncologist not hematologist...
Seems very competent. I dont think she will recommend tx but when wbc higher than prior results I just wanted to know more .
Why hematologist? Either way I would ask about it. Will keep you posted. Thank you.
A general oncologist is trained to treat cancer in general. A hematologist is an oncologist with further training specifically for dealing with blood cancers. Some hematologists focus on one or more specific blood cancers. CLL researchers usually just treat CLL.
Well no tx. For now. I understand what hematologist was and she is both. She is going to follow me. My prognosis is good obviously since I've had since at least 2004. It is the side issues ..ie skin cancers etc that have shown up. Otherwise I've done well. I tried to pin her for a red line of tx but most other things hemoglobin and platelets all ok. Grateful. It seems so random for each person. Thankfully treatments are improving. Hoping we all stay well. Thank you for your response. Fyi I live out in thousand oaks area. I dont know where you are in l.a.
Thanks again for great information.
Santa Paula. We’ll have to connect. Good that your doctor is not rushing you into treatment. Watch and wait can wear on you, and I think venting about that with people who “get it” every once in a while helps. So stay connected, share your good news, and vent away when you need to.
Sorry didnt see message... anytime... dr. Says doing well even with some numbers changing. I guess the genetics and mutations are very helpful.
Hope all is well... I somehow never see my posts...
Yes seek a CLL specialist. Look up CLL specialist at UCLA . That’s where I would start.
Dr. Eradat - UCLA
Drs. Rosen and Siddiqi - City of Hope.
Both City of Hope and West LA have cllsociety.org sponsored patient support groups. Whether in LA or elsewhere where there are groups, it’s worth attending at least a couple of meetings, as you can compare notes about area doctors.
The situation for Kaiser patients is difficult. Patients, for the most part, are limited to “in house” doctors. People I know who have opted for Kaiser seem to get either the very best, or the very worst possible care. Part of that has to do with learning how to “work the system”, and part has to do with your location and it’s ability to pull in great doctors.
Thanks for that. My doctor seems good... I guess anytime you say the word cancer we just normally worry. I think they do link to city of hope but, I do not need tx yet. I think it just scares me everytime I go for follow up. She was very reassuring. Thanks for info
1230
I am m 67 in india and 3 yrs with CLL.
It is nice feeling to know that u r on w n w since2004. I am hoping to have a similar wnw.
I also take homeopathy medicine. Do you know what medicines you were taking? My homeo doctor has never ever got a CLL patient, so she has no experience.
Best wishes
Vinnet
Well besides standard vit d3 b12 bvit ..etc.. I do take a readily avail detox combo which they give cancer pts. This was recommended.
Genesis complex and glutathione powders which must be perfect source. Maybe for you that is not homeopathic enough but it without prescription. Idk if all this helped. I do have chromosomes that are generally in my favor. My dr visit yesterday she felt I'm doing well. Platelets and hemoglobin are are big item and of course how do I feel. So feel free to check. If something for you.make sure good sources are trustworthy.
Hope that helps.
Every small input helps!! What is detox combo? What dose?
What are Genesis and gluta... and dose?
If i know about these and discuss with my homeopath or GP, they may suggest to me .
Anything that can help improve qol and also extend wnw, is very important for me.
Since u have long experience, any advise will be useful.
Drinking lots of water is the best 'detox'. If you are being treated, allopurinol can help avoid organ damage from Tumour Lysis Syndrome, but in general detox preparations are not necessary (nor do they have any evidence of providing any benefits) as our bodies naturally maintain organ health.
Neil
These were powders I believe many cancer patient use. They are not prescribed. One of them is plenty of vitamins that are not in most . The other was more detoxify liver. So healthy diet which I constantly have to improve on... exercise I truly believe is a factor, and vitamins that improve immunity and detoxify. Hope that helps
Please go and see a fully trained hemato/oncologist or, better, a CLL specialist. Homeopathy lacks a scientific basis and time is often of essence.
1230,
Newdawn covered the reason to treat.
Here are two top CLL specialists, one in your area and another who is very close.
Dr. Susan M. O'Brien at UCI, Orange Ca.
patientpower.info/bio/susan...
DR. Thomas James Kipps at UC SanDiego Ca.
providers.ucsd.edu/details/...
JM
My dr is both hematologist and oncologist at kaiser fyi. She also is not looking at any tx. She said patients mixed bag of wbc etc ... should hemoglobin and platelets start to show bigger issues is her area to possible pulse tx. Not there yet, gratefully.
Thanks for all your advice
Actually Irvine is quite a bit south of 1230 and San Diego further south. When you add traffic into the equation they would involve significant travel time. The doctors you listed are among the best, and would be worth seeing for a second opinion or a trial, but there are closer specialists listed above
You are right.
Getting an accredited specialist that is close is a challenge.
I travel 1320 miles round trip.
One advantage to seeing someone at any of the UC (University of California) facilities is that your records are in the UC system and can be accessed at the other facilities if you decide to change locations or get a second opinion elsewhere. Southern California has top specialists from LA down the coast, at UCLA, UC Irvine, and UC San Diego.
Kaiser is a closed system. You have options “in house” but not outside of their network. I have seen friends get the very best, and the very worst of care through ther system, but I suppose that the same can be said of any health system.
All things considered and well argued, I would still rather be Lucky than Good.
I maintain that "In the end, We Win!"
Ask your oncologist how many CLL patients he treats and who would he recommend who treats more. There is a CLL Society in LA. Check in with them. Good luck on your journey. Anna
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