UK CLL Forum, UKCLLFORUM

Any chance? (need for best privte CLL doctors in UK)

Topic Made On: Aug 10, 2015 02:44pm
Clone_152

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My friend's dad (60 yr old) got diagnosed with CLL, I don't know how long ago.

Recently he told me that NHS doctors have given up on him after giving him certain drugs to reduce his WBC count (not successful) so that they could proceed with bone marrow transplant and expected him to live for next 12-18 months.

He sent me following text;
------------------------------------
Chronic Lymphocytic Leukaemia
Drug used campath
(alemtazamab)
Partial response

Main cause
P53 Genetic mutation
(Deletion).
------------------------------------

Please, is there any way to save this individual's life....his family is ready to do anything....there has to be a way which might be in research but not yet used in practice....if someone can please guide me which expert to consult....I have the hospital's letter covering technical data about him.

Thankyou,
Friend




Replied On: Aug 11, 2015 08:44am
AyeWright

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Sorry to hear about his status/diagnosis, and he is in my heart.

"Rick Simpson Oil" may be one alternative. If my own case degenerates, it's my main option if I have the means.

There are always options.

Seek peace, however this turns out.



Replied On: Aug 11, 2015 09:08am
Heather42

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Hi
I also have 17p/52p deletion, i dont know where  you live, but try and get a referal to ST James University Hospital in Leeds, Prof Peter Hillman,is doing trials, he is a Cll specialist, i an currently on a trial, and its working well, had a few hiccups along the way, but so far im good. Im on rituximab and idelalilsib. I hope you manage to get a better treatment, campred is an awful treatment and as its high dose prednisilone, i wouldnt have been able to tolerate it as im very sensitive to prednisilone xxx



Replied On: Aug 11, 2015 09:34am
lartington

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Re clone 152. How very worrying. You don't say what area of the u.k your friend lives. There is a list of cll specialists Mr. Google will show this. There were about 26 last time I looked. It is not necessary to have a private cll consultant as the tests can become extremely expensive and the treatment moreso. If you can get a second opinion to a centre of excellence, ie bexley wing, St James Leeds has an excellent cll dept. prof Peter hill men is the senior consultant he has an excellent team of medics. Your friend should ask his gp for a referral to such a place. Prof hill em also has a private clinic at the Nuffield hospital Leeds. You still need a referral, your gp should suffice in this direction. B.w. Hw



Replied On: Aug 11, 2015 09:42am
kestrel

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I'm sorry to hear of your friends father and the dilemma he faces?I can only think he must still be quite fit still if he's being considered for a bone marrow transplant.I too have 17/53 and been down various chemo routes without lasting success,but one year ago I was lucky to be placed on Ibrutinib which without I would not be alive today.I would recommend this he approaches his consultant to see if he is a suitable candidate for Ibrutinib,and please wish him well from all of us who suffer from CLL.Regards Lee



Replied On: Aug 11, 2015 08:10pm
Clone_152

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Sorry to not inform you, he lives in Sheffield but he doesn't mind going to any other place in UK if the doctor is skilled enough. As for Ibrutinib, it does seem a good choice. We a doctor at Manchester today, he told us another option, GDC199.

Main idea is trials come and go but some among them are the best. I need a source so that I would know what part in UK what doctors are having best trial results.

Thank you for support, you guys are really awesome



Replied On: Aug 12, 2015 08:46am
Heather42

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It is Prof Peter Hillman im under, and on a trial, i know he has a few on the go at the moment, one is APT196, He is amazing as are all his team, they really know their stuff x



Replied On: Aug 12, 2015 08:46am
Heather42

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It is Prof Peter Hillman im under, and on a trial, i know he has a few on the go at the moment, one is APT196, He is amazing as are all his team, they really know their stuff x



Replied On: Aug 12, 2015 11:02pm
lartington

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As your friend lives in Sheffield, Leeds is very closeby. You can NOT improve on the team at ,Bexley Wing, St.James Hospital, Leeds. Prof Hillmen leads all the trials currently held in the U.K. don;t think they are all disjoineted, that is NOT the case. I would urge you not to spend time searching around, this is one of the best in the U.K. As previously suggested your friend might like a second opinion privately from Prof Hillmen at The Nuffield Leeds, from there he would tell you what is appropriate and available on the NHS. good luck hw



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