Re: NHL] indolent lymphocytic lymphoma SLL grade IV B-cell - Kalina

[Guest guest]

Dear Chonette,

Your mail was quite helpful for me. It looks like I have to insist on using Mabthera/Rituximab for my treatment. I'm from Bulgaria and as far as I know Mabthera has been used only for 2 years, it's very expensive and our health system can't pay for it. It so sad for people in our condition to fight with the doctors intead of relying on their help.

In any case I'm happy I found you. I received a lot of information and great advices. Thank you!

Regards,

Kalina

NHL] indolent lymphocytic lymphoma SLL grade IV B-cell - Kalina

Dear Kalina,

Welcome to our group. I find interesting your doctors response, in fact Rituximab (Rituxan in some countries) if not approved for CLL in the UK, but when I had it first my insurance paid for it because we put on the form SLL and they approved, the next time I needed treatment (2007) the insurance did not want to pay for the drug and of course the National health Service in the UK does not allow to be part private and part NHS so in order to have the combination I wanted I had to paid for the Rituximab myself and the insurance paid for the other drugs.

200mg of Rituximab costed £401.00 pounds which I think is about 800 USA dollars.

I am back under the care of the NHS consultant and we are talking about Campath, which she will have to ask for funding, but at least there will be a chance.

The NHS does use Rituximab for NHL.

Where do you come from?

You say: "The doctors here think that the less I know is the best for me". Well that attitude is international in many doctors, fortunately not all think like that and thanks to those doctors with a more open mind regarding patients, we now can be better educated about our condition and manage it in the best way we feel right working together with the doctors, after all it is our body we are dealing with, so we should have a say into what we are going to do. The other point is that the better we understand things the better chance we have to take care of ourselves and prevent or cope with any side effect.

It takes a long time for someone like me that is not very scientific to understand these things, but time goes by fast and before one notice it we no longer feel estrangers in the CLL world, and our lives go on side by side with CLL

regards

Chonette (UK)

dx 10-02 (aged 57)unmutated, CD38 20%, ZAP70 9%, 2003 Prednisolone 8 weeks 50 mg. a day, 2004 Prednisolone 8 weeks 50 mg.a day, followed bylow doses chlorambucil (2 mg.), 2006 Rituximab and low doses chlorambucil (6 mg. a day 14 days on 14 days off) 6 rounds, 2007 Low doses Rituximab, 2007 Fluradabine Lite, HDMP,. Rituximab 200 mg. monthly (5 rounds)Partial Remission, multiple pea size nodes on neck and other parts of the body,feeling well and energeticthinking about what's next

PS my Hb before christmas was 14.1 can't believe so high, however platelets went down to 108 so we can not have it all good.

Fw: [NHL] indolent lymphocytic lymphoma SLL grade IV B-cell

Posted by: "Kalina Georgieva" kalina_vl (DOT) com kalina_vl

Fri Jan 4, 2008 2:22 pm (PST)

Hi All,Thank you so so much for your warm words and the information! I haven't felt so relieved since I understood for my disease. You gave me a great hope! Antonia is absolutely right. The doctors here think that the less I know is the best for me. They even asked me about my edication and were quite upset that I have high degree. For them it means that I'll bother for the treatment too much and ask too many questions. For example, I read for Rituxan and understood that it helps a lot in cases of CD20 positive NHL. When I asked the doctors they said that it's a new medicide for our country and prescribed only in heavy cases. So if I insist on using it I'll have to pay. But my doctor wants to see the results of the current therapy first. He says that to use Rituxan for SLL is like pointing an elephant with an arrow. It would be really helpful for me to receive your advice on this matter.Thank you once again and to share -

I'm truly happy to find this group with so many wonderful people.Hugs, Kalina

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[Guest guest]

One thing that is important to point out is that CLL and SLL are the exact same disease. The distinction made for the use of rituximab sounds entirely arbitrary. Addtionally, there are good clinical data supporting the use of rituximab in CLL. While rituximab is certainly expensive, its risk:benefit ratio is so favorable, it is hard to justify not using it. Good luck "pushing back".

Rick Furman, MD

NHL] indolent lymphocytic lymphoma SLL grade IV > B-cell - Kalina > > Dear Kalina,

> Welcome to our group. I find interesting your doctors response, in > fact Rituximab (Rituxan in some countries) if not approved for CLL > in the UK, but when I had it first my insurance paid for it > because we put on the form SLL and they approved, the next time I > needed treatment (2007) the insurance did not want to pay for the > drug and of course the National health Service in the UK does not > allow to be part private and part NHS so in order to have the > combination I wanted I had to paid for the Rituximab myself and > the insurance paid for the other drugs. > 200mg of Rituximab costed £401.00 pounds which I think is about > 800 USA dollars. > I am back under the care of the NHS consultant and we are talking > about Campath, which she will have to ask for funding, but at > least there will be a chance. > The NHS does use Rituximab for NHL.

> Where do you come from? > You say: "The doctors here think that the less I know is the best > for me". Well that attitude is international in many doctors, > fortunately not all think like that and thanks to those doctors > with a more open mind regarding patients, we now can be better > educated about our condition and manage it in the best way we feel > right working together with the doctors, after all it is our body > we are dealing with, so we should have a say into what we are > going to do. The other point is that the better we understand > things the better chance we have to take care of ourselves and > prevent or cope with any side effect. > It takes a long time for someone like me that is not very > scientific to understand these things, but time goes by fast and > before one notice it we no longer feel estrangers in the CLL

> world, and our lives go on side by side with CLL > regards > Chonette (UK) > dx 10-02 (aged 57) > unmutated, CD38 20%, ZAP70 9%, > 2003 Prednisolone 8 weeks 50 mg. a day, > 2004 Prednisolone 8 weeks 50 mg.a day, followed by > low doses chlorambucil (2 mg.), > 2006 Rituximab and low doses chlorambucil (6 mg. a day 14 days on > 14 days off) 6 rounds, > 2007 Low doses Rituximab, > 2007 Fluradabine Lite, HDMP,. Rituximab 200 mg. monthly (5 rounds) > Partial Remission, multiple pea size nodes on neck and other parts > of the body, > feeling well and energetic > thinking about what's next > > PS my Hb before christmas was 14.1 can't believe so high, however > platelets went down to 108 so we can not have it all good. > > Fw: [NHL] indolent lymphocytic lymphoma SLL grade IV B-cell

> Posted by: "Kalina Georgieva" kalina_vl (DOT) com kalina_vl > Fri Jan 4, 2008 2:22 pm (PST) > Hi All, > Thank you so so much for your warm words and the information! I > haven't felt so relieved since I understood for my disease. You > gave me a great hope! Antonia is absolutely right. The doctors > here think that the less I know is the best for me. They even > asked me about my edication and were quite upset that I have high > degree. For them it means that I'll bother for the treatment too > much and ask too many questions. For example, I read for Rituxan > and understood that it helps a lot in cases of CD20 positive NHL. > When I asked the doctors they said that it's a new medicide for > our country and prescribed only in heavy cases. So if I insist on > using it I'll have to pay. But my doctor wants to see the results

> of the current therapy first. He says that to use Rituxan for SLL > is like pointing an elephant with an arrow. It would be really > helpful for me to receive your advice on this matter. > Thank you once again and to share - I'm truly happy to find this > group with so many wonderful people. > Hugs, Kalina > > > > > > ____________________________________________________________________________________Looking for last minute shopping deals? > Find them fast with Search. http://tools.search./newsearch/category.php?category=shopping