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, October 26, 2011

Maintenance. 2 weeks down...154 weeks to go!

I started maintenance two Wednesday's ago. So far it's going ok. I'm still adjusting to the effects of the drugs and trying to work out the best schedule, but overall it's going fairly smoothly.

I also started working again at the beginning of October (part time on a rehabilitative status, so technically I'm still in disability) so that has made life much busier keeping on top of all the schedules. It's good to be back though. Overall I feel like we are finally getting back to "normal" though, which feels great. It's been a completely insane year. Last year at this time (I specifically remember it was right around Halloween) I was dealing with acute bone pain and suspected I fractured another rib...which had me absolutely terrified. It turned out there was no fracture (which was even scarier!) and that set off the process of me finding a new doctor to figure out what the heck was going on.

Here I am a year later waiting for an injection of a proteasome inhibitor (a type of compound I had used experimentally in the lab during my grad school days) and trying to figure out the best way to deal with my rapidly regrowing hair, which, btw, seems to be a lot more gray now...having cancer must be kind of like being president, it ages you faster from all the stress! ;p

I am really looking forward to the holidays this year. Myeloma completely ruined them for me last year. The doctor actually said he considered waiting a few days to give me the biopsy result, but in the end decided it was better to call me 3 days before Christmas. Needless to say I was a complete zombie. This year will be different! :)

As for the details of maintenance, the regimen is:

20 mg dex, once a week (orally) 2 mg
Velcade, once a week (sub cutaneously)
15 mg Revlimid, once a day for 21 days then 7 days off

The dex I take the same day as the Velcade injection, and the Revlimid I take every night before bed. The dex I think is the worst in terms of side effects so far. I get all amped up on the day I take it, which is also the day I sit around in the waiting room for hours at the cancer center waiting for the Velcade, so that isn't exactly a winning combination! Luckily the dex hasn't been interfering to much with my sleep so far. Many people say they can't sleep at night on dex day, but I seem to still get tired at the same time...must be those kids running me ragged in the evening! I wake up feeling pretty crappy the next day though...headache, grumpy, flushed, short of breath. The first week it continued all day into Friday, last week I started feeling better Thursday afternoon. The Revlimid has just been causing some mild GI issues. They told me it could swing from constipation to diarrhea, and that's pretty much how it has been so I'm still kind of waiting to see how that will, ahem, regulate itself. The Revlimid is also expected to decrease my blood counts (from hitting the good cells in the process of hitting the bad cells). This week was my first drop in platelets, but my white count is holding strong and my hematocrit is still increasing (still recovering from the second transplant). The Velcade injection has been uneventful. Some people have a local reaction or redness at the injection site, but that hasn't been a problem for me.

So we are going to just keep on trucking. Halloween is coming up and the kids are VERY excited. Olivia is going to be the Wicked Witch of the West and Oden is going to be a skeleton. They both have an overactive sweet tooth (like their momma) so the chance of candy overdose on Monday is very real!

10 comments:

  1. Hey, Jody-
    Just caught up through your October posts. This is good news... actually, it's GREAT news!
    I love the pictures - you look terrific and your kids ar just adorable! I see both you and Alex in their sweet, little faces.
    I'm so glad to learn you're well into your maintenance program and that you're not on a daily multi-med regimen. Still, what you've been through has been daunting, to undertate.
    Also glad to learn you're back to work part time (sometimes 24 hours can seem longer than 40)- between your job and your munchkins, the next 12 months will pass quicker than the last.
    Much love and lots of prayers are sent to you every day. May you feel stronger with each passing hour. Ileana

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  2. INtending that every day in every way your new cells are getting stronger and stronger and life's new normal is less stressful and more enriching, for the highest and best good of all concerned, so be it and so it is!! Whoooooo!

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  3. Stress can be hard on your hair... but the changes could be temporary too. Good luck with your treatments and thank you for sharing. Good luck with everything!

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  4. jody:thank you for your blog. We are a young family with kids as well and would value your thoughts on starting treatment in December and advice on staying in touch with the kiddos while away. If able, could you contact us? we're at waho_family@yahoo.com. Thanks!

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  5. Hi Jody- I haven't kept up with all my myeloma-blog-friends for a while, and glad to read you are getting back to some semblance of "normalcy" and in the maintenance stage!! Today is my 2yr anniversary of my diagnosis, so far so good. On .5 Revlimid maintenance since Oct 2010, after SCT, and yes hair comes back crazy colors, with grey and apparently, Rev grows hair lol. All the best to you and your family in 2012, and hoping for full remission for you always! Julie from CA

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  6. 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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  7. As a sign of gratitude for how my wife was saved from myeloma, i decided to reach out to those still suffering from this.
    My wife suffered myeloma in the year 2016 and it was really tough and heartbreaking for me because she was my all and the symptoms were terrible, she always complain of bone pain, and she always have difficulty falling asleep . we tried various therapies prescribed by our neurologist but none could cure her. I searched for a cure and i saw a testimony by someone who was cured and so many other with similar body problem, and they left the contact of this doctor who had the cure to myeloma . I never imagined myeloma has a natural cure not until i contacted him and he assured me my wife will be fine. I got the herbal medication he recommended and my wife used it and in one months time she was fully okay even up till this moment she is so full of life. myeloma has a cure and it is a herbal cure contact the doctor for more info on drwilliams098675@gmail.com on how to get the medication. Thanks admin for such an informative blog.

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  8. 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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