Update

The rituximab yesterday went well - he is in today and tomorrow for 2 small transfusions.  We will be back in Oakland on Tuesday - and we're beginning Exjade on Wednesday. We hope that they do not find any iron in his heart when they do the MRI.  We'll be speaking to Dr. Vichinsky again and we hope to bring back more valuable information for all of you.

The rituximab should be complete in two weeks so he should stop making new antibodies soon, the old antibodies - which are still circulating in his blood may take some time to disappear.  We hope to see the effect of all of this soon in terms of decreased transfusion frequency and lower iron levels. 

I don't know if other families who have antibodies have discussed this method with their health care providers - but I will keep you posted on our progress. 

Sharmin

Also, Andy the write up with Rituximab states that vitamin supplements such as vitamin e are to be avoided with rituximab. 
I have given him any vitamins since we began treatment.  I wonder if this applies only during the time he is getting ritux (next few weeks) or if it applies for an extended period of time after.  Are you aware?  Thanks Andy.
 
Sharmin

Rituxan is a powerful drug with many side effects. It is best to avoid mixing it with other drugs unless your doctor approves it in advance. The same goes for all supplements. Unless approved by the doctor, do not take anything else during the course of treatment.

http://healthlibrary.epnet.com/GetContent.aspx?token=401bb2b1-70d7-495f-8b8c-e81da9e6916c&chunkiid=209320

Talk with healthcare provider before using aspirin, aspirin-containing products, other pain medicines, blood thinners, garlic, ginseng, ginkgo, or vitamin E.

Ask Dr Vichinsky when it will be safe to resume his normal course of supplementation once he is done with the rituxan therapy.

Andy,

We are still giving him 250mg of vitamin C  - which we give him 1/2 hour after beginning desferal.  Should we hold back the vit C as well?  or is it mostly supplements such as vit E, garlic, aspirin b/c of their blood thinning qualities?  Today is the last day that we give him desferal until after he begins Exjade on Wednesday.  We will be talking to Dr. Vichinsky before he resumes desferal. 

Thanks for the information Andy,

Sharmin

Vitamin C is not a blood thinner and is also a water soluble vitamin, which washes through the body rather quickly. It is a very simple vitamin and one in which there is no difference between natural and synthetic. The body cannot manufacture its own vitamin C, so it must be obtained either through diet or supplements. 250 mg is not a high dose. This is safe would pose no problems.

Thanks Andy.  We have gotten through the IVIG and 2 ritux treatments.  I am a little nervous and excited about beginning Exjade.  I hope that everything goes well, and if it does I look forward to eventually not having desferal anymore.  What a lifestyle change that would be!   

We are now preparing for another trip to Oakland on Tuesday.  Once again we are creating our list of questions.  Is there anything else that may be useful for us to discuss during our meeting for our son?  Is there anything I can ask on your behalf which may be helpful to our thal friends? 


Sharmin

Sharmin,

I have many questions but this one keeps popping up. What is considered to be the minimum the Hb level that should be maintained before transfusion is required in thal majors? This used to be in the 8-9 range, but recent opinion seems to lean towards the 10-10.5 range before transfusion. Ask Dr Vichinksy if he concurs with this protocol.

Today is the last day that we give him desferal until after he begins Exjade on Wednesday.

I'm so happy for you!

No more daily needles will surely have a positive impact on his mood

Andy,
I will ask Dr. Vichinsky about ideal pre tx levels. 

Sajid,
For the time being we will be on exjade/desferal combination treatment, we hope that in the future he can use just the exjade - perhaps later in the year    But hey, if that happens in the near future we will be free from needles! 


If anyone thinks of anything else later today I will add it to my list,

Sharmin   

Andy,

The goal is to have pretx hg levels between 9 and 10.  They thought that below 9 was too low and can interfere with growth and cause the spleen and bone marrow to expand. 

We did receive a lot of info - if there are any other questions you are welcome to ask while it is all fresh in my mind 

Sharmin

 Hi Sharmin,

It will be great if you can ask him at what age and how frequent should thal patients undergo tests to indicate  if a  hypercoagulable state exists in a thalassemic or not. And is Vitamin E enough to avoid thrombophilia?

We have discussed this topic in this link
http://www.thalassemiapatientsandfriends.com/index.php?topic=1937.msg16232;boardseen#new

Thanks

Manal

Hi Manal,

We have already met with the doctor today - I would have loved to have asked your question.  I will write it down for our next meeting or I will email it to them.  We are temporarily off of supplements b/c of the rituximab but once we resume with them I will need a complete list and I can find out more about the vitamin e also.  I will ask about the hypercoagulate state in an email.  Our next visit will be in January. 

If there are any other questions I will try to respond from our meeting today if we discussed it.  We went through quite a lot. 

Sharmin

It okay  Sharmin, thanks a lot


How was the visit and what did he say about our little soldier?

manal