Friday, October 15, 2010

Maintenance Journey begins....

Hello All,

I have not written in a very long time. I guess it could mean one of two things… In my case, it means that I am still here, alive and simply really busy with life. I guess that is a good thing. I am nearing one year anniversary since I was diagnosed – it was Oct 16th last year. There were many uncertainties at the time… there still are but one I can cross off the list. I found the best doctor ever and gone through an amazing experience over the last eight months of active treatment. I survived! There were up and downs… frankly, probably more ups thanks to all the people who supported me both in Little Rock and back home. The biggest thank you is to my mom who marched down this path with me. I said this before, but I think it was much harder on her than me. Thank you also to all the wonderful folks I met through the internet, all over the world who are also battling this disease. I continue to be inspired and amazed by all of you. Special thank you goes to Nick V. – you paved a roadmap not just for me but for many who followed your footsteps… things seemed and felt less scary after reading your first hand experience. Thank you! I will be always truly grateful for everything you have done for us, fellow MMs…
I had a great check up at Little Rock at in Sept and yesterday started my maintenance. Thank you to Dr. Martin at UCSF who found a local oncologist who will administer Valcade/Dex weekly for the next three years. This is huge for me as this doctor is 5 mins away. The first treatment yesterday was uneventful and lasted around 15 mins. I am loading up on the neuropathy preventive mediation… For others on the MM journey, here is what UCSF recommends: 200-400mg of alpha-lipoic acid daily, 500-1000mg L-Carnatine daily, 50 mg of vitamin B6 daily. I have started taking all that about one month ago – so far so good.

That is it for now…

Love,
Lina

5 comments:

  1. Thanks for sharing the good news Lina - Very happy for you!

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  2. I know its a bit late but Happy Anniversary! ;D

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  3. Lina:

    I wish you the best as you transition into the maintenance phase of your treatment. Little Rock is nice, but I know that it's good to be back home! Maintenance has been uncomplicated and well tolerated for me - I pray the same for you.

    Sean

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  4. Congratulations on making it to the next leg of your myeloma journey Lina! We are very happy for you.

    As a note, we take up to 2400 mg/daily of Alpha Lipoic Acid if needed. Generally 1200/daily is doing the trick.

    Best,

    Lori

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  5. Was "checking up" on you Lina. I would guess that you are in a pretty full swing of living your life these days and that your maintenance therapy and check ups are going well. We will be in LR end of Feb 2011 if you happen to be there too, please let me know! Would love a meet up.

    Happy 2011 Lina! (hugs to your Mom from one caregiver to another)

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