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I'm very confused

Hi All, Can anyone clarify if Is being on Watch and Wait, re Chronic lymphocytic leukaemia (CLL) is considered, a Treatment’ for the purpose or the Benefits and Possibilities of the various vaccines that we may be eligible for. Thanks Ron

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Hi @Vindicatrix a very good question, I am in a similar situation.
Some people call ‘watch and wait’ ‘active monitoring’, which it is testing, usually via blood tests at regular intervals.
One medical dictionary definition is
‘The management and care of a patient’
My active monitoring means I am being managed and cared for regularly???
I look at that I manage my symptoms on a daily basis.
I live with a compromised immune system therefore because of that (and my age?) I am classed as Extremely Clinically Vulnerable.
I believe I have been offered all suitable vaccines (flu, tetanus, pneumonia and Covid etc.), but not ‘live’ vaccines.
My suggestion is go for it and state your case, people can only say ‘no’,
If you would like to speak to someone at Blood Cancer UK the support line details are above.
Sorry to ramble and to make it clear I am not medically trained.
It will be interesting to hear the thoughts of others.
Look after yourself and let us know how you get on.

Dear Ron @Vindicatrix, welcome to the Blood Cancer UK forum and I hope we can help you with your questions. In regards to vaccine eligibility you will be able to see that Chronic lymphocytic leukaemia (CLL) watch and wait patients are entitled to the 3rd primary dose of the COVID vaccine here: https://bit.ly/3FLy5wG. Our web pages can be very helpful in supporting you when on watch and wait as we are aware that it can be a stressful time: Watch and wait | Blood Cancer UK. Please let us know if we could be of any more help or support. Kind regards, Gemma

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Watch and wait is a fairly common treatment for cancers ,admittedly not a very exciting one, but they are waiting to see what will develop as they can’t be treating constantly as the treatments are by their nature very strong and will damage the body so they only use them when the cancer is on the move.If you are on watch and wait you have an active cancer and will be classified as extremely clinically vulnerable so will be contacted regarding the coronavirus booster and flu jab too but sadly there’s nothing to use against the Common Cold so be careful as the Common Cold is packing a real punch this year probably because of a lack of immunity over the last two years?All people who have active lymphoma and leukemia are classified as extremely clinically vulnerable.

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Hi Kevan, I hope you’re keeping well? You have very clearly given accurate information here which is very valuable to many. In relation to keeping safe this winter, our healthcare have some information here which may be useful- Coping with risk and uncertainty as restrictions are lifted | Blood Cancer UK.
Thank you again for helping others in this space during what continues to be such an uncertain time for the blood cancer community.

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Thanks Erica, I enjoyed your reply, (I didn’t think you rambled in the least, by the way). I had my booster three weeks ago, alongside my Flu jab, I am told by my Haemotoligist, that I could get another Phnuemonia jab of a particular type, as well as the new Shingles jab, (Must be the new one).

They may benefit me apparently. I would be interested to know if others, have had these jabs. I just had my first bloods and physical, face to face with my new fifth Haemotoligist, in three and a half years… It was a ‘Private’ Cosultation (Not NHS) as I was let down, the night before, by them. I was supposed to see one chap, after waiting 20 months for a face to face, , he gave no explanation for the last minute cancellation, so I went Private. The Private chap was very nice, but he did not check my weight, or do bloods, and only looked at the previous bloods taken 6 months prior. Three days later during a Physio check up, the physio, found a big lump half the size of a golf ball, under my armpit. I went to the GP and was told that some of those who had, the Booster’ jab, were getting similar lumps, both Chronic lymphocytic leukaemia (CLL) and Non.

He said, he thought that, the lump to be there, 3 weeks after the jab, it was unlikely,that it was jab related. So, I was referred back to the private man, within 8 days of seeing him last week. He wants to see me at an out of hours appointment next Monday. It would appear, that he either missed my new biggish lump, or thought it was one of my many previous ones that I still had, but was not growing. I don’t think he was in possession of ny full Medical Notes
I am hoping that he will elaborate on Monday when I see him again. I am obviously concerned, as if he did miss the new lump, or, it was not there when he checked last week, it means that it grew and was visible within four days or so.

More likely is, that he (Not having my notes) thought it was an old lump.Either way, it will hopefully be resolved soon , and I will keep you all update on the result, as it may, have some bearing on your own experiences. All the best, Ron

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Hi @Vindicatrix yes, I believe there is a new, non live, shingles jab available now, I am having it on Tuesday. My surgery have had to order it in for me.
I hope the lump you have is investigated, you must be concerned so please keep updating us.
Look after yourself.