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Stage 1/2 CLL and no follow-up visits?

Stage 1/2 CLL and no follow-up visits?

Hello all! I have been a lurker for about a month. My 57 yo husband was recently diagnosed with CLL. Diagnosis was confirmed by flow cytometry. He has swollen lymph nodes throughout his body and a slightly swollen spleen.

He received his FISH test results today, and they were "normal". He is negative for ZAP-70 and CD38 which I understand is good news. He spoke to the local oncologist today who said that he probably would not need treatment for 10 years and that no follow up visits were necessary (?). I did not like the laid-back approach of this guy when we first met him, but I have never heard of a case where a patient was not given a plan for follow-up visits. Thankfully, we have an appointment in Seattle next week with an expert.

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Hi wildred,

I’ve never heard of a case where a patient hasn't been given a follow up appointment either especially with swollen lymph nodes and a slightly swollen spleen. Regardless of how good his biomarkers are, the watch and wait protocol demands some degree of surveillance and monitoring so I’m relieved to hear you have an appointment with a CLL expert shortly. Your instincts are right!

Please let us know how things go.

Best wishes,

Newdawn

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Thank you so much, Newdawn!

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Good post right en pointe! Welcome wildred 🇨🇦

~chris

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Thanks, Chris! I just got the joke...:-)

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Welcome Wildred! I’m glad you found this ever-so-valuable site. I too am the “wife of”, my husband was diagnosed almost two years ago and is on W&W.

After his first appt with his hematologist, he went monthly, then ever other month, 4 months and now every 6 months. His blood work numbers rarely change, but we always feel better after an appt. We always have questions, and feel better knowing he’s being well cared for.

I hope you have a good appointment with your specialist.

Until then, and anytime, please ask any and all questions. I still feel like a newbie, but there are many others here to help with all your questions and concerns.

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Thank you so much for your kind response!

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Hi Wildred -

Welcome to you and your husband.

I was diagnosed in July with SLL at maybe a little bit lower involvement than your husband and I've been getting bloodwork at 3 month intervals for now . . . in order to see if there are any trends to catch at this point. If the bloods are stable they'll taper me off to 6 month or annual workups, which sounds pretty standard. My doctor said we're especially looking for trends in absolute lymphocyte counts, platelets, and red blood cell counts.

I'd be worried, too, if the doctor doesn't want to followup to see what the trends are!

- Marie

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Hi, Marie,

That is very helpful information. Thank you so much!

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Hi and welcome! I was unimpressed with my diagnosing primary care physician. I've since changed PCP. I was also unimpressed with what felt like a "this is no big deal" attitude from the local oncologists office I was referred to, so I went to Seattle. It's about an hour and half away (non-rush hour, of course) and well worth the travel. I was seen, given a lot of information with a real sense of caring. My condition and the plan for watching it were carefully explained. When it was time to make choices I was given options and education about them. I believe it makes all the difference to have a CLL specialist guiding treatment. Best wishes on getting the answers and reassurance you need. And there's always this friendly group here for support.

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Good evening. At an hour and a half from Seattle, may I ask where you live. We are in Gig Harbor.

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We are in Bellingham.

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I'll be at the CLL Patient and Caregiver Educational Forum at the Swedish Dec. 16. I hope to see you there!

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Your story is identical to our story. We are going to see Dr. Shadman at the SCCA. Thank you so much for the words of encouragement!

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Get away from that doctor as fast as you can. No follow up plan? That's ridiculous. Always and forever see a specialist, and I emphasize 'specialist' who treats only those with the lymphomas, CLL, SLL, etc. Happy to hear you do have another appointment. Carole

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Thank you so much for your encouragement. I was pretty surprised, too.

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Smart move on your part! Sometimes we need to be our own advocate. Hopefully you also know about the CLL Patient and Caregiver Educational Forum at the Swedish Dec. 16. It should be very informative.

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I have seen mention of that. I will have to look into it. Thank you!

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We are in Gig Harbor. Perhaps we will see you there. Best wishes to you...and here is the info for the post ASH information meeting:

cllsociety.org/docs/2017%20...

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Thank you so much! I will let you know if we can get there.

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Hi I am 57 and was recently diagnosed with CLL and would be considered Stage Zero since I have no symptoms other than high lymphocytes with slightly low platelets no 17P deletion and I am unmutated. This is a good diagnosis and I was put on a 3 month cycle of visits for the coming year. I too sought out a second opinion and I am using MSK in NYC. My hematologist at MSK is involved in research and clinical trials, so I figured if I need treatment somewhere down the road I would be able to get access to cutting edge treatments. I plan on keeping both sets of eyes on me while on wait and watch since my Dad had NHL and it took his life with a Richter's transformation. Find a local Doctor you're comfortable with and keep the expert too. They will share test results and hopefully not let anything slip through the cracks. Also if you haven't found The Leukemia/Lymphoma Society(LLS.ORG) yet look them up, there is a wealth of information and support available from them. Knowledge is power when it comes to this disease.

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Thank you so much for your valuable advice!

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One of the best Patient Guides is available for download at the link below. It was recently revised of 2018

nccn.org/patients/guideline...

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I had not seen that. Thank you so much.

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I to first went to a doctor who was not an expert on CLL . I took him a type written paper with several questions on it. He did not answer even one of them. I went home and got on goggle and found the "best" cancer hospital within a two hour drive. That turned out to be KU Medical Center. I them made a list of all the doctors there that treated CLL. I goggled all of them and graded them. Only one doctor made an "A" . I went to him for a second opinion. He talked to my wife and I for an hour, he them made a comment that he understood I was only there for a second opinion. I stopped him and corrected him that I only came there for the second until We had been there 15 minutes, I said I want him for my doctor. He talked to us them another 30 minutes and asked us if we had any questions. ( he had answered all of the questions on my sheet without seeing the sheet ). I asked him what he wanted to be called since some doctors are picky about that . He said "I don't care what you call me . You are my patient and I am your servant ! " by the way he is a teaching professor with 35 years treating CLL. I am in a stage 0/1 and he does complete blood work and office visit every six months

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Was it Sirridge)

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Yes , do you know him ?

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Yes, he saved my life. My regular doctor missed my cancer despite the fact that she knew my mom had CLL and I had pneumonia 4 times. By the time I made my way to Dr. Sirridge (who had treated mom for years), I was stage 4 with all my lymph nodes "hot" and my spleen enlarged and pneumonia yet again. (White count 249,000) He wanted to try something just a little unconventional, and that was despite the fact that I am unmutated, (and Zap 70 and Trisomy 12), he still wanted to do 4 rounds of FCR. (instead of 6) I agreed and well, treatment free for 2 years now. I do IVIG every month because of low IGG numbers. And just so you will know, I also went to MD Anderson and they were happy he stopped at 4. I had a bone marrow biopsy there, and despite the fact that I didn't achieve MRD negative, I had only 1 percent CLL cells. I am not sure MD Anderson would have gone the FCR route, probably Ibrutinib instead, but that is the next drug for me. He listens to me, mourned with me when my mom died, responds quickly when I need him, so believe me, you are in great hands.

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I am so sorry to hear of the loss of your mother. It sounds like you are in great hands.

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Thank you. I do feel my doctor is great. My mom died as a result of an infection due to CLL. She fell, needed stitches, and stayed in the hospital overnight where she contracted sepsis and died. CLL folk have got to be diligent about hospital infections and doctors MUST remember this is a risk. We were adamant about starting antibiotics, but they would not listen. Our specialist was not there at the time because he does not practice at the hospital she was taken to. Long story, but please everyone, be aware of sepsis.

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What a shocking story about your mum Kmiller and you’re absolutely right about being sepsis aware.

I’ve had sepsis and also contracted a bad infection in both cannula sites in my hands in hospital. I actually got out of bed and knocked on the door of the doctor’s room and told him I wanted a certain antibiotic to be administered intravenously immediately. He said, ‘good suggestion’ and did it!

Unbelievable just how pro-active we need to be sometimes.

Glad you are in good hands.

Newdawn

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Good grief. Yes, what is so sad for us, is I did the CLL talk in the ER. I told them her neutrophils and white count were low and could they give her an antibiotic. Didn't happen. Upon admitting her, I asked again. Didn't happen. Throughout the night, I asked again several times. 30 hours after being admitted they started her on one. She was dead 6 hours later. I ask myself what if over and over. But I also speak to my friends with elderly parents about this, so they can be aware. Her CLL doctor was so upset but because it was a medical community, he couldn't say too much.

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Wow! He sounds like a gem. I hope we are as lucky on Wednesday.

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Hello Wildred,

I too am a lurker as my 56 year old husband was diagnosed with CLL just about a month ago. Our local hematologist also was very blasé about it all, didn't order FISH test or even give hubby the news of his diagnosis personally- just over the phone. We have scheduled an appointment with Dr Farrukh Awan at The James cancer center at OSU about a five hour drive from us. We have also finally identified a recommended local hematologist who has experience with CLL. We are so grateful to all the members here. This site has been instrumental in figuring out next steps for us. Please keep us posted on what you learn from your expert and we will do same!

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This sounds quite familiar Kwilson! I'm glad you've found good support and this forum. Welcome out of the lurker shadows and into the comments!

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Thank you so much. I know he may not need treatment for awhile, but I certainly think he needs to be followed with some regularity.

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My oncologist here in Indiana wanted to start treatment in August. That was when I went for a second opinion to Dr Farrukh Awan what a great doctor. He told me not to start treatment at this time I was so happy. I am getting my blood work every month in Indiana and test results are sent to Dr Farrukh Awan. My WBC is 96,000 and Platelets 76,000. My counts are like the stock market per Dr Farrukh and I am feeling great. I am working full time. Every month my counts are different some months my WBC is 70,000 and Platelets are 106,000. Also my spleen is enlarged. I am blessed by God not needing treatment at this time. Waiting for a miracle.

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That is great news! It seems like delaying treatment as long as possible is the way to go.

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I'm 13q . I'm negative for ZAP-70 and CD38 but unmutate. I read in my results something about CD 23 which gave me the unmutation. I guess it's not only the AP-70 and CD38.

Nakajima

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That is good to know.

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Sorry mistake...it's been awhile I looked at the test results. Was CD 5 & CD 20.

CLL is of B lymphocyte origin and typically co-expresses CD20 and the T cell marker CD5, and displays a clonal immunoglobulin gene rearrangement. Lack of somatic mutation (>98% homology to germ line) in the IGH clone is associated with a comparatively poor prognosis, whereas >2% mutation carries a much better prognosis. Attempts have been made to identify surrogate markers, such as CD38 and ZAP-70, for VH mutation testing. However, results with these markers are discordant with accurate VH mutation status in up to 30% of patients. Negative prognostic variables in CLL further

include 11q-, 17p- and trisomy 12. The ability to identify high-risk patients based on VH status is an important advance in the understanding of CLL. These patients are eligible for more intensive therapy protocols aimed at prolonging survival. This testing approach also is useful for identifying lower risk patients, who may not need treatment for many years, if ever.

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That looks like a general statement, not sure it applies to you specifically...

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Hi Wildred! I was diagnosed 8 years ago, stage 0, watch & wait. For the first year, my heme/onc. saw me every 3 months with blood work and a physical examination of nodes, spleen and liver. After having no trends that suggested treatment ( I also have good prognostic markers) during that first year, she cut visits back to every 6 months, and eventually to once a year, which is my current schedule. I still get blood work every 4 months, and when I see her, she still, 8 years later, always checks nodes, spleen and liver. She is always available if I have any questions or concerns and takes time to listen. She is a local HMO doc, and I have yet to see a CLL specialist. I am glad that you are going to be seeing a specialist, as it doesn't sound like your doctor is being attentive to your husband and both of your needs. I hope, by this time, that you have settled in with a new doctor, are feeling heard, and that your husband is doing well! Best regards!

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