when to begin treatment

[carol_h]

Hi, my name is Carol, this is my first post. I was diagnosed in May, 2010. I haven't had any treatment yet, besides doing my best to keep myself nutritionally healthy and my outlook positive. My numbers are a bit off though, WBC ranges from 168 - 190, my hemoglobin is always low, today it is at 7.4 and my platelets range at 15. I know I am due for another transfusion. I have been getting packed red blood cell transfusions now on a monthly basis, to bring my hemoglobin to a higher level, also had 2 platelet transfusions, which really never make that much of a difference, as my platelets only go up a few points. Other than feeling tired, because of the anemia, I feel well, have a good quality of life. I'd like to know if I started the Treanda Rituxin treatment as suggested by my oncologist, how would this further affect my hemoglobin count along with the platelets. I really don't want to suffer adverse effects due to my already low hgb & platelet count. Has anyone experienced this?

[Ernest2]

Hi Carol,

A really big Welcome to HU, and thanks for the post

I think you have got some good answers below from some great people, so I've edited my original one here to avoid confusion.

Please do let us all know how you get on, and the best of luck with the choices.

Best Wishes,

Ernest.

[HAIRBEAR_UK Founder Admin]

Hi Carol

Thanks for your post, welcome I see you have been with us for two months well done for posting.

An understandable and interesting question '" I'd like to know if I started the Treanda Rituxin treatment as suggested by my oncologist, how would this further affect my hemoglobin count along with the platelets. I really don't want to suffer adverse effects due to my already low hgb & platelet count".

This really is a question for someone with specialist clinical knowledge and understanding of your particulars and CLL. Have you asked your consultant about your concerns?

Are you in the UK? You mention you are being treated by an oncologist, have you considered talking to the nurse specialist about your concerns often they are more approachable and easier to talk with if not getting answers from your consultant?.

Nick

[Cammie]

Carol

Nick gives sound advice in his reply.

Sometimes we forget that our medics are our servants who are trying their best to ensure the best outcomes for individual patients.

A specialist nurse or your heamotologist/ CLL specialist would definitely be the persons I would get advice from rather than just relying on an oncologist.

You must get the right treatment for you!

Unfortunately it seems from your post now is the time!

All best wishes

Geoff

PS well done for posting such an interesting question.

[carol_h]

hello everyone, thank you for your replies, along with the welcome. It is good to be a part of this group, as so many questions arise, it's good to know that I am speaking with those who truly understand (first-hand). I appreciate the sound answers.

I am going to a Hemotologist/Oncologist here in the US. She has been very kind towards me, understands my fears, and always answers any questions I may have. Although, I have been hesitant to start treatment, she is waiting for me. Which is nice, some doctors are very pushy, they don't even allow you to think about it. I had an appointment with her today, my hgb is 6.8, platelets 19, wbc is over 150. They scheduled a transfusion for me tomorrow, here I go again. I think it's time I say yes to the treatment. Thanks for letting me know the Treanda (Bendamustine) and Rituximab is a good choice. I hope I do well with this treatment. I plan to begin the first round end of August or first week in September, it is scary to me, I will keep you posted. Should you have any other experiences or advice to offer, please do. Thanks again.

God Bless!

Carol H.

[Cllcanada Top Poster CURE Hero in reply to carol_h]

Hi Carol...

I strongly recommend you get a second opinion from a CLL specialist ...

It would be inappropriate for me as a patient to comment on treatment options , but there might be alternatives that need to be explored...

~chris

[HAIRBEAR_UK Founder Admin in reply to carol_h]

Hi Carol I must also agree with Chris it is not appropriate for a patient to comment on suitability of a treatment for you in this forum an earlier comment has been removed by admin. Please can you discuss your concerns with your consultant/medical team and consider a second opinion as Chris suggests..

Nick

[PaulaS Volunteer]

Hi Carol,

Welcome to this site. Sorry you had to join, but I'm sure you'll be glad you found us.

Yes it is rather scary, facing first treatment. I will be starting first treatment next month, so I understand your apprehension. We're going into a new stage of our lives, and it's all a bit unknown. But there are plenty of people on this site who have been through similar experiences, who can encourage us on our journey.

I hope all goes well with your transfusion today.

God bless,

Paula

P.S. It's great that you have a good relationship with your oncologist, and you trust her. However, I agree with what others have said, that it could be helpful to get a second opinion from a CLL specialist.

[carol_h]

Thanks everyone. I will also be speaking with another Dr. as well, regarding all of the treatment options.

God Bless!

Carol H.

[wroxham-gb]

Cannot advise you CArol, but just to let you know I am on rituxanmab and bendamustine(treanda) and doing well. It is an individual path we walk and we need to listen to our specialists/doctors. They advise well.

Anyhow welcome and my best wishes for whatever you decide in the future.

Sue

[carol_h]

Thank you for all of your kind replies.

[ladyprescott]

Welcome Carol. I found this forum about a year and a half ago and so happy I did. We are all in the same boat here and many have good information for you. Glad you found us and be sure to come back often. Carole