After 5 years of W&W the consultant at Marsden is now of the opinion that now would be a good time to start treatment. He is, I believe, recommending O&V being first line treatment in the UK NHS. I am mutated. and key results are as follows ; WBC 98.6, HGB 123, RBC 4.21, MCHC 308, Neutrophils 13.8, Lymphocytes 75.92, Monocytes 6.41,
I have another appointment next Monday at the Marsden for more tests and to finalise treatment. I would very much welcome feedback from the very knowledgeable that is this forum. Thank you
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The best persons to explain when a CLL patient needs treatment are shown in this Pinned Post. healthunlocked.com/cllsuppo...
Those are USA CLL experts, but the reasons to start treatment are the same in the UK.
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A CLL expert would look at your Red blood components- if your Hgb, RBC or platelets were way below normal they might be a cause to treat.
A CLL expert would ask about your symptoms, check your lymph nodes and spleen to see if they were grossly enlarged.
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So perhaps you should ask your consultant why he/she thinks you need treatment. If the answer is something like "I don't like to see WBC over 100" then you should ask for a 2nd opinion from a CLL expert. Your consultant is confused with other blood cancers that use a white count as a limit.
I agree. When I first was treated with chemotherapy for my CLL, after to sessions, I had a few issues which I told my oncologist about, but he did not give me satisfactory answers. The next day, I decided to take advantage of my eligibility for VA healthcare and had a meeting with the head hematologist at the VA in Washington, D.C., who told me that I should stop treatment and come to the VA for my CLL healthcare. When I told her that my WBC was 40,000 (that is the reason my outside oncologist gave me for starting treatment), the VA hematoligist said to me: "I don't care if your wbc is 100,000, that by itself does not justify treatment." I immediately, switched to the VA and was kept in a watch and wait status until Ibrutinib was approved by the FDA. By that time my wbc was nearly 300,000 (and I cannot recall the specifics of my other blood work) and I started taking Ibrutinib. 8 years later, my wbc jumped for 12,000 to 25,000 but because my LDH jumped to 319, I was told that by my March appointment, I may be switched to Ibrutinib and Ventoclax.
HGB and RBC look slightly low to this non-doctor, relative to normal ranges supplied by my oncology team. However, I had similarly slightly-low numbers in PLT for most of my Watch and Wait and that did not trigger treatment. My ALC (Lymphocytes) and WBC numbers were also well above yours, and that did not trigger treatment for me either.
What does trigger treatment is signs that you are experiencing symptoms from your CLL that are creating other health problems. So I'd look at how you're feeling. Spleen pain/swelling? Obvious lymph node protrusion? Significant fatigue or shortness of breath from the mild anemia your blood would indicate? Absent any of that I might question whether treatment timing could be put off.
However... I'm in the US on private insurance, not in UK NHS. So another factor might be how easy it might be to get treatment later if you ask to delay now. Your healthcare system might react differently to that than mine does. The US sometimes tends to overrecommend; not sure about the UK.
Good luck with your treatment decision and selection regardless.
Thanks for your response. The only symptoms which I have are a bit of a lack of puff when trying to exercise ! The consultant seems to think that is as a result of the reducing HGB levels . Apart from that no symptoms.
Im a patient at the Marsden too. it's very unlikely a consultant there is making an elementary mistake. They seem very clued-up to me It could be that it is the trend in your lymphocyte count over months/years that has triggered the advice to treat. Your neutrophil count also seems rather high. Perhaps you could ask whether this is a matter of concern (maybe not).Subject to the above, I would urge you to follow Len's advice. I did the things he mentions when the Royal Marsden first wanted to treat me back in 2021. I got a second opinion from a consultant at UCL (Dr Jasa ni) who very much agreed with the consultant at the Marsden.
Interesting to hear that you are being treated at the Marsden. I go to the Sutton site . My concerns about getting a second opinion would be firstly , how do I go about getting that opinion ? and secondly if it would somehow damage my relationship with the current consultant who has been very supportive and helpful. Are you now on treatment ? If so what did you have and and how has it affected you ? Thanks Keith
I have read later replies and it is puzzling that you are being advised to start treatment. Possibly there has been a change of thinking on this but I never read anything to that effect.
You are entitled to a second opinion under NHs guidelines. I think first step is to ask for an explanation from your consultant. Unless you are 100% convinced by the explanation then ask the consultant to refer you for a second opinion. I recommend Dr Jasani who is brilliant I think.
As for me I'm on O and V at RMH Chelsea under Drs Iyengar and El Sharkawi. On whole I'm very happy with my treatment and feel extremely well although had an uncomfortable rash a couple of weeks ago. I'm only having half of the V recommended dose and discontinued the O early. It was explained that the full treatment was too strong for me as I was having various cytopenias. I may have to discontinue altogether soon but I have reached UMRD which now seems the primary objective. I am so glad I chose this treatment rather than Acalabrutinib which was offered to me.
I forgot to say it would be most unprofessional for a doctor to let a request for a second opinion affect the doctor/patient relationship. I would try to forget your worries regarding this aspect. My request did not appear upset anyone.
I would add that I didn't find the initial hospitalisation for the first Ob infusion easy. I had fevers and vomiting. But the nursing was fantastic. But although it was difficult it was well worth it. Would do it again if needs be.Antony
I can't comment specifically on the blood results as they are only part of the clinical picture. What I can say is that I was diagnosed stage 4, immediately had a 2 unit transfusion back in November 2020. I went straight to O+I and was in uMRD in <250 days. I am acalabrutinib daily and have monthly bloods and currently monthly IVIG. I live a full pre covid pre cll lifestyle and enjoy every minute. The drugs are great...
Thanks for your reply. It is really encouraging to hear that you are leading a normal life ! My consultant did say that my life should be normal with no lifestyle changes . It's good to hear that is your experience.
It's personal choice , I know risks especially with virtual no IgG and low neutrophils. But I am 59 , full time dad to my 2 youngest kids 5 and 3 , my other 3 are self sufficient in mid 20s.... so ensuring my younger have full life. Cape Deim
Am surprised not offering Calquence as first line of treatment. I started last November and my haematologist tells me white and red cell count back to normal. Think I am in remission but must continue with this wonderful drug
Thanks for your reply. Did you have any side effects of the Calquence ? Whereabouts in the UK are you ? I assume that you at not treated at the Royal Marsden ?
only two side effects so far-a bit of bruising and very occasional nose bleed. Bit of diaoreah but all ok. Am being treated at Hammersmith -am told best unit in Europe. My haematologist Dr Ari Chaidos -excellent service for NHS
I believe there is a clinical trial now underway with respect to W&W (I will try to find the link). It was during the pre-targeted therapy days when W&W was implemented. Researchers now want to determine if W&W is still the way to go in this Eera of non-chemo targeted therapies.FP
I think you said your spleen and liver were enlarged in a past post. When my numbers started to rise more quickly I had scans that showed my spleen and internal lymph glands were enlarged. My spleen grew and pressed against my stomach. I was full quickly and lost weight.There wasnt a choice in 2010. I had fcr and 8 years later began Ibrutinib. Most people find it reduces spleen and lymphnodes quickly. My dose is reduced to 120mg.
I would love to have the 2 drugs you have been offered. If all is well you may have chance to stop treatment. Ibrutinib alone needs to be taken until it stops working. I am in remission and a low dose.
The Venetaclax needs to be introduced gradually and that is why it is supervised in a hospital.
You are going to one of the best hospitals and their advice will be correct. We never used to argue with consultants. They will explain their reasons to treat and put your mind at rest.
We are so lucky to have treatments like this. You wont be locked away with all your hair falling out. Side effects will settle, if you have them.
Chemo wasnt much fun.
Dont worry things will sort themselves out, Anne uk
Thanks Anne. That is really encouraging and I agree that we are very lucky to live in a time when we have so many good treatment options other than chemo. I haven't been diagnosed with an enlarged spleen or liver so possibly someone else. It's strange that the only symptom that I seem to have is a slight shortness of breath when exercising. Keith
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