UK CLL Forum, UKCLLFORUM

Treatment soon

Topic Made On: Oct 30, 2011 01:38pm
macone

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Hi diagnosed in dec 2009 was basically told not to worry and put on watch and wait. Since then my wbc has been rising now exceeding 150 lymphe nodes swollen in neck and groin and on my last examination was told my spleen is enlarged. Since my last visit i've had a cat scan and a bone marrow biopsy.Get my results on 2nd nov and told to expect treatment sooner rather than later. I'm only 55 and just a tad concerned.

:(




Replied On: Oct 31, 2011 12:37am
Nick

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Hi Macone,

Sorry to hear you may be leaving "watch and wait". keep us posted following your results on Wednesday. I hope you are given news to allow you time to get used to this.I am only 48 and a little behind you on the path and on "watch and wait". I hope others who have been where you are can reply. Good luck

Nick



Replied On: Nov 01, 2011 04:18pm
macone

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Hi Nick
Will keep you all posted. Thanks for the reply.



Replied On: Nov 04, 2011 12:54pm
macone

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Hi all

Well i went, cat scan showed i had i think he said heavy nodel involvement in my neck, chest and abdomen. Not sure what he said about bone marrow biopsy. To be honest a lot of it went straight over the top of my head.
Upshot of it was i am to start treatment I've been given the choice of two possibly three different treatments. The first one being Bendamustine, second one is R.F.C. or the third is i may be included on a trial which is the R.F.C. and something else added still waiting for details on the trial.

A lot to swallow anyone give any advice on which route to take ??



Replied On: Nov 05, 2011 03:10pm
Zeno

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Macone, this is a difficult question and for me. I find it hard to understand why the choice is left to the patient with these kind of diseases. My own view is that if the consultant is an expert on the type of leukaemia that you have and is aware of the various elements of it, he/she should be making the choice of the best form of treatment based on historical research and empiricism, current trends and registered results. You should not be left with this choice in my view. If your consultant does not have a research background of CLL, it might be useful for you to find one who has and seek a more affirmative view of what treatment might be best for you. Over the ten years I have never chosen my treatment but listened to my consultant, both a reader and researcher in haematology, the regimen he believes will work followed his advice. Thus far this has worked and my life has continued fairly normally although much of it has been tough. Links are available somewhere in this forum for looking up experienced consultants. You have the right to choose.

My thoughts are not intended to be negative, but I continue to maintain that you should not be left with choosing your treatment. Which ever, i wish you the best.



Replied On: Nov 09, 2011 03:43pm
macone

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Hi Must admit i tend to agree to a certain extent. Not sure if they are trying to bring me sort of into my treatment plan? Not sure there are any best plans as regards treatment regimes? Is it that some plans work better for some than others and outcome is not known until treatment is tried?
Any more thoughts anyone???




Replied On: Nov 10, 2011 11:12am
Chonette

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I was diagnosed in 2002 and I always felt better working as a team with my consultants, decisions were always made with both of us in agreement, seeing all aspects of the treatment based on my priorities, for me quality of life was first, so several of my treatments were tailor made based on that.
I moved away from consultants that tried to impose their will and I did not agreed with their choice of treatment.
Being well informed always helps to understand the differences between treatments, the international CLL forums has a vast amount of info from patients experiences that is very useful to know when trying to make such decisions, we are all individuals and we all react in a different way, to drugs and life situations, I had refused to have fluradabine for years and when eventually all else failed and had to have fluradabine, I did not respond at all, so we tried the combinations of High Doses Methyl Prednisolone/Rituximah/fluradabine Lite (California was doing a trial with HDMP/Rituximab, and MD Anderson was doing Fluradabine Lite at the time)that gave me a better results, but later on Campath did the real trick to clean up my marrow.
There are more choices now and things have moved on, which is good for new patients.
The road is not simple, wish you well with making your decision.
Best Regards
Chonette
almost 3 years post Stem Cell Transplant
doing well



Replied On: Nov 10, 2011 02:41pm
Nick

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Hi Macone,
It is a lot to swallow. Have you been given a time frame? It’s all fair and good us being involved in the process of treatment decisions. But ultimately we rely on the qualifications, knowledge and skill of our consultant to be able to select the treatment for us that in his/her opinion may provide the proven best result based upon the diseases characteristics and our health at the time of the decision. Of course you would expect them to be able to explain why they had a preference and what the pros and cons of alternatives may be. Then you are best placed to be able to make a decision. If much of this went over your head, perhaps you need to get in touch again.(try the secretary, ask for another appointment)

Of course if you have spent a little time on line learning about CLL and these treatments it will help in your understanding, however I think it unfair for a consultant to assume you are that informed. The consultant with a special interest in CLL will have the knowledge and understanding of CLL to arrive at a decision with you not for you. If your consultant is an expert or is consulting one that is, then as Zeno so eloquently put, he or she should be aware of the various elements of your disease and those specific to you and should be able to make “the choice of the best form of treatment based on historical research and empiricism, current trends and registered results.” (empiricism emphasises the role of experience and evidence, especially sensory perception, in the formation of ideas, over the notion of innate ideas or traditions). Phew, I had to look that one up.

Here is a link to some UK experts: http://www.cllsupport.org.uk/experts.htm you are entitled to a second opinion, it is a very big decision and your life. You should always be involved in treatment decisions but feel confident that you are being guided to the right one. That is the job of your medic and not the on-line community. Chonette points out the road is, not simple, a good reason to feel confident in the decision you are to make.
I hope my armchair penneth worth is of help. So much must be going on for you at the moment and you have a lot to come to terms with. keep posting.

Take care and good luck

Nick
PS, I can't remember who signs off their posts this way but I've always liked it: We can't change the cards we're dealt. But we can choose how to play them. Following on from Chonettes comment,I noticed while reading the ACOR email journal this morning that Professor Hamblin has been answering queries, several offering opinion on treatment options. perhaps if you posted there you may elicit a response from him. But be sure to include all of your stats with the post. Perhaps he may be able to assist?

http://www.acor.org



Replied On: Nov 11, 2011 04:18pm
macone

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Hi All
Have taken on board all your comments and am thankful for them and the support you have shown.
Next appointment on 16th Nov.
Will keep all posted



Replied On: Nov 14, 2011 05:12pm
macone

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Hi Recieved details of the trial today. It's the Admire trial the drug added to F-C-R is Mitoxantrone. Will find out more on 16th and update then.



Replied On: Nov 18, 2011 03:26pm
macone

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Hi All

Update on my last visit on the 16Th nov. Start Chemo on the 28th nov. Will start on the admire trial if my echo cardiogram is ok if not it will be fcr.
Will update again soon.



Replied On: Nov 19, 2011 02:23pm
Nick

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Hi Macone,
Thank you for keeping us updated. It sounds as if you have been able to reach some understanding about your treatment options. Sorry to hear things have to start so soon. Good luck with the cardiogram. Keep posting and throw anything out to the experenced here who may be able to comment.

Good luck and take care.

Nick



Replied On: Dec 02, 2011 08:49pm
macone

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Hi all
Cardiogram was okay and i'm now on the fifth day of my first cycle of FCM-R. Had 2 eight hour stints Mon and Tues in hospital, Wed Thur and Fri were oral F and C taken at home.
Not many problems up to now just a bit of nausea and tiredness but i was allways tired before treatment. The main problem i seem to be having is insomnia caused by really bad nightmares.
Has anyone else had the nightmares i supose they could be put down to stress. Went to see gp he prescribed sleeping pills will try them if things don't improve shortly.
Thanks for listening will update again shortly.



Replied On: Dec 04, 2011 03:50pm
Nick

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Hi macone,

Good to hear the cardio was good. Things have moved quickly, when are you in for your second cycle? Nightmares not good. Hope the sleeping tablets work. I was given this video clip presentation on cancer related fatigue,in treatment and post treatment. It would appear that sleep disorders are common.

"Since Nick brought it up, this is an excellent presentation
on cancer-related fatigue by William Breitbart of Memorial
Sloan-Kettering Cancer Center,

several clips, follow links on the right, this is the first
clip,

http://www.youtube.com/watch?v=YuxljGrXYY8&feature=relmfu

"Fatigue is one of the most common symptoms experienced by
cancer patients during and after treatment, but is often
undertreated. Psychiatrist William Breitbart of Memorial
Sloan-Kettering Cancer Center explains what cancer-related
fatigue is, and its effects.""




Replied On: Jan 02, 2012 05:52pm
macone

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Hi All

Second cycle completed today. It's certainly been a quiet new year. Had a bit more nausea with this cycle.
Good news is my w.b.c. dropped from 196 to 14. Rest of my counts are reasonable. So it seems things are going well.

udate later



Replied On: Jan 25, 2012 03:20pm
macone

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Hi Just had the rash from hell. Had a reaction to septra. Clearing up now. start next cycle tommorrow.
Update Later.



Replied On: Jan 26, 2012 08:56am
Robert Cork

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Macone

I also had a skin reaction to Spetra whilst of Fludarabine treatment (it's quite common as patients are allergic to the sulpha content of the drug). This resulted in me receiving a monthly pentamidine nebuliser to prevent PCP infection. This continued for 6 months following the end of treatment whilst my Tcells recovered to a satisfactory level.

Regards

Robert



Replied On: Jan 28, 2012 04:27pm
macone

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Hi Robert
I too am now on a monthly Pentamide nebuliser. Currently on day 3 of third cycle bit tired and gippy apart from that all is well.
Update Later

Regards Macone.



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