Was diagnosed CLL in 2010 and have been on WW since. However my ALC has increased from mid 20's to mid 40's in the last 6-9 months which has prompted my hematologist to start making noises re treatment. Feel reasonably well in myself and free from ongoing infections, but have significant lymph node swellings to my neck and body. Now here is the thing, I have been recovering from major accident trauma for the last 2.5 years and am due to have an arthroscopic ankle fusion with AVN talus complication in a months time. As I understand it the success of this procedure is affected by the degree of blood supply to the area and in particular the various specialist blood cells that are required for the healing process. My hematologist seems to think that having FCR treatment whilst this is ongoing would not be a problem but I am not so sure. I would think that the blunt instrument of FCR chemo would inevitably also affect the very specialist blood cells required for the fusion healing process. I am minded to postpone any CLL treatment to give the ankle the best possible chance to succeed. So what would you do??
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Redlion
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Hi Redlion, I understand your predicament because I need an arthroscopic shoulder repair to a fully torn rotator cuff which I sustained in a fall last year. I discussed this with the orthopedic surgeon and he seemed very clear that they would be very unwilling to do this whilst I was receiving treatment for the CLL (which isn't needed at the moment). His main concern was infection and general health during this period. As it's transpired, the tissue in the area is not felt to be strong enough to effect a successful repair so I'm basically living with it.
My question to your haematologist would be why the urgency for FCR now? Your ALC is considerably lower than mine (though there has been a bit of a hike over the past 6-9 months but not to alarming levels) and you don't seem to be having any major B symptoms. Of course we don't know your other blood levels like platelets, haemoglobin or neutrophils or whether the internal enlarged lymph nodes are impinging on vital organs or functions. I think you need to ask the haematologist if the FCR could be delayed until the ankle procedure is completed. Even withstanding the blood cell function and healing issues, it would be a bit of an ordeal to undertake the two together unless the FCR has become pressing. I'd want to know what CLL factors are making the need for FCR imminent.
any chance of getting ur two specialists to chat?. My sister had ankle surgery, not ur particular problema, but nevertheless. You might not want to be trying to cope with moving around physically and possible nausea or worse from FCR at the same time. I think I would go for getting combined advice. There are pros and cons probably only specialists could advise you on being clear on each other's perspectives and expertise. My ten cents worth!
Good time for a second opinion from a recognised CLL specialist, given your current specialist's lack of concern over the impact of FCR on healing - let alone whether treatment is actually needed...
Thanks for the advice. I think I will postpone any CLL treatment for the time being unless my hematologist can provide compelling reasons not to do so, I am seeing him next week in any case. I have been having thoughts about seeking out a CLL specialist as whenever I raise issues or concern regarding various symptoms he is extremely reluctant to acknowledge that it has anything to do with the CLL, for example I have complained about tiredness and fatigue from the beginning but it is only recently that he has conceded that this could be related to the CLL, I know now from the posts on this excellent forum that this is a very common feature of this disease and is not necessarily just related to low hemoglobin (which I do not have). Any suggestions for a CLL specialist in the South East (UK), preferably south of London?
Newdawn - I am sorry to hear about your shoulder injury, I know how serious and debilitating that injury is as a very good friend of mine had just the same, although he was fortunate enough to have had his re-attached successfully. He wont be trying out my sons balance board again in a hurry that's for certain.
Hi Redlion. You've already had some great replies but I thought I'd add my bit.
A few months ago I was told I needed surgery to remove my gall bladder. (I was getting frequent pains and a scan showed numerous stones). The waiting list for this operation is usually quite long, but both my haematologist and the gallbladder surgeon agreed that in my case, the op should be done as soon as possible. This was partly because gallstone problems can aggravate CLL, but was also because I might need treatment for CLL later this year. They wanted surgery to be done and out the way before starting any treatment. Treatment can complicate things (eg higher risk of infection).
I hope you find a good CLL specialist in the South East. I'm sure there are many around, that other folk can recommend. You might like to ask that question as a separate new post, so more people will notice it.
I was scheduled to have arthroscopic shoulder surgery in July 15 but when blood tests results from my cll appt in May 15 showed increased lymphocyte count the anaesthetist was not happy to proceed, began treatment, Flair Trial, Rituximab and Ibrutinib, and had to wait until March this year for surgery, now having physio after successful rotator cuff repair, (full width as Newdawns, joined with twisted wire!), gradually becoming less painful. Terry
Interesting that for @terryl, the decision was to have CLL treatment done before surgery (in the shoulder). But for me, it was advised to have surgery (gallbladder removal) before CLL treatment. In both cases, having surgery during treatment was avoided.
I can see that each situation is different and there are many factors to consider. How urgent is the CLL treatment? How urgent (and complex) is the surgery? How might each of those conditions affect the other?
In my case the gallstones were probably making my CLL worse, and removal of the gallbladder is not usually a complicated operation. But your orthopedic problem, Redlion, is very different. I hope all your doctors will think about your situation very carefully, and liase closely with each other.
Let us know how you get on…
Paula
P.S. So glad to hear that your rotator cuff repair was successful, Terry.
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