M is for Myeloma is a place to chronicle my family's newest 'adventure' living with multiple myeloma to keep family and friends updated and also hopefully help others living with the disease.


Wednesday, March 28, 2012

Goodness I'm bad at keeping up with this!

And that really just means that things are busy, and it's been "good busy". :)

I've been feeling pretty good. A little tired from the anemia still, and a few little colds have blown through but nothing like November when I was so sick. I think it's a combination of my immune system improving and the fact that I now force myself to recognize I do still have limits and need to rest when I start felling something. Maintenance is going ok, the dex is still the worst part. I'm so amped and scatterbrained on the day of then coming down the next day I'm grumpy and short-fused. I need to do some research to see if there is anything that helps take the edge off the withdrawal. I started taking MetanX back in January for the peripheral neuropathy and I have really noticed a difference so I would recommend anyone experiencing neuropathy to try it out. It's a pescription B vitamin supplement approved to treat neuropathy in people with diabetes. It contains a specific form of B12 called methylcobalamin, the ore common cyanocobalamn is apparently not as effective so be careful if trying to supplement without the prescription. They prescribed this is Arkansas, and my home doctor/nurses didn't seem to know too much about it or give it to other patients. Hopefully me mentioning it to them will change that. Back in January I was getting tingling and numbness in toes and fingers starting about 24-48 hours after Velcade each week. I would also get a mild hot/burning sensation on and off, and my perception of hot and cold would be off in my fingers, which I found quickly was not so good when testing bath water. ;) At first I couldn't figure out why the kids kept complaining it was too hot. I have barely noticed any neuropathy at all for the past month at least, just the occasional very mild tingle but not every week and not continuously. No more burning at all.

I also determined last week that eating a big cheeseburger (of the delicious 5 Guys variety) may do wonders for my hemoglobin. On Wednesday my hemoglobin 11.9 (just under normal). On Friday I had a cheeseburger (normally I don't eat much red meat), and the next Wednesday my hemoglobin was up to 12.5! That was the highest it had been in months! Now I have a really good excuse to back my cheeseburger indulgences.

In other (mostly) non-medical news, March was super busy and it flew by! My daughter celebrated her 6th birthday, which was awesome. Last year I missed her birthday because I was in Arkansas getting started on treatment. That was so hard. I knew I was doing the right thing, but missing that day really hurt. Now a year later I've come so far, and we had so much fun making her birthday special. Although, when she woke up on the day I asked her if she was excited to be six. She thought about it and said "I kind of wish I was still 5, I really liked being 5.". So sweet! Also proof that we did a good job keeping last year normal for the kids. That made me feel really good, because that was one of our main concerns.

Now that it's been a year since I started treatment, I've been thinking back a lot. It's just crazy to think that last year at this time I had just arrived home after induction and stem cell collection. My hair was on it's way out then, and now it's a crazy curly mop! I'm not obviously a cancer patient anymore It's been a long year, probably the hardest of my life. I've learned so much along the way, met so many great inspiring people, and learned my fabulous my friends and family are even more amazing than I ever could have imagined!

5 comments:

  1. I've had the same experience with cheeseburgers! :) Isn't it nice to have an excuse? Glad you are doing well!

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  2. New to reading your blog and happy to hear you are busy living life! Nice to have a research scientist sharing with us, though I'm sorry you were diagnosed with MM. My husband has also found Metanx helpful for his PN, though it's still pretty bad as a result of Velcade and Thalidomide. Continue feeling well!!

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  3. ALL THANKS TO DR WILLIAMS WITH HIS HERB MY WIFE WAS COMPLETELY CURED FROM MYELOMA
    Is my pleasure to comment on this site and i thank the admin of this site for his/her great work so far.one of the happiest moment in my life was when the doctor confirm that my wife is been free from this illness. this awesome moments makes me the happiest man on earth, I really don't know how to thank DR WILLIAMS for helping my wife get cured for over how many year of suffering from myeloma. i came across DR Williams contact through a headline news on internet about how DR Williams help a woman to get cured of her myeloma and so many other with similar body problem ,i contacted him and he told me how to get his herb,few day later he sent me the herbal portion which my wife take every morning for 28 days, and his medicine was able to cure her completely from myeloma. and now she very mush okay without any side effects whatsoever, If you have myeloma , you can contact him on his email address drwilliams098675@gmail.com for advice and for his product.

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  4. ALL THANKS TO DR WILLIAMS
    I was diagnosed of myeloma in 2011, I have tried all possible means to get cure but all my effort proved abortive, until a friend of mine introduced me to a herbal doctor , who prepare herbal medicine to cure different kind of diseases including myeloma , when i contacted this herbal doctor via his email, he sent me the myeloma herbal medicine via courier service, when i received the herbal medicine he gave me step by step instructions on how to apply it, when i applied it as instructed by Dr Williams i was totally cured from this disease within 1 months of usage. any body with similar problem can Contact this great herbal doctor via his email drwilliams098675@gmail.com for advice and for his product,and thanks to you admin for such an informative blog.

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