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Just another day?

Posted on January 13 2014 by Pat Killingsworth | 609 views

I feel great!  Energy level is good.  I’ve even been experiencing less bone pain, allowing me to cut back on my pain meds.  So why am I so apprehensive about  a tiny prick in the arm today?

All part of the routine surrounding my six week treatment cycle; once a week Velcade, sub-q with a dexamethasone chaser for four weeks, followed by a welcome two weeks off.  On Monday of the sixth week, I drive an hour south to Moffitt Cancer Center for a blood test.  I then drive back on Friday to meet with my myeloma specialist, Dr. Melissa Alsina.

But this week feels different.  If my M-spike creeps up–even by as little as 0.1–Dr. Alsina and I will have a decision to make.  It won’t be if she should adjust my well tolerated treatment regimen, but how.  And not when to make the change, but NOW!

What drug–or drugs– should be added in order to try and halt my slowly advancing myeloma?  I’ve shared examples of the most likely therapy adjustments we’ve considered with you in the past; adding Cytoxan or switching over to Pomalyst (pomalidomide).  My local medical oncologist, Dr. Vikas Malhotra, suggests we try adding low dose Revlimid one last time.  But Dr. Alsina is concerned about the dampening affect Revlimid has had on my immune system in the past.

Cancer patients are advised to live “one day at a time.”  So I shouldn’t even think about any of this today, right?  Just a pleasant, post rush hour drive into sunny Tampa, followed by lunch with my friend and fellow myeloma support group leader, Richard Blustein.

I should have the test results by Friday afternoon.

Feel good and keep smiling!  Pat

11 Comments For This Post

  1. jc Says:

    When the decision is that close, and that crucial, it would almost be impossible to ignore. There are times this journey is very stressful. Looks like you have a good plan in place to get some support today.

    Add to the fact, that often our body chemistry is all out of balance, MMer’s really do an amazing job handling what we do:)

    I am so fortunate not to have bone pain. So, I am considering adding running to my schedule as a way to deal with some of the stress and maybe improve my sleep. It would be interesting to know what others use to reduce stress. I can’t blame drugs for not sleeping…so I figure it is my impaired kidneys messing up my chemical balance.

    Prayers for good results and wisdom for all involved in your care. Thanks for sharing your journey.

  2. John Blankenberg Says:

    Hello Pat,
    I am doing well for now.Today i have a very stiff back.Could be the weather(cold).My m spike is 0 at the present.Near remission,but i expect a relapse. Have a good day,John

  3. Nancy Shamanna Says:

    Hello Pat, I am wishing you all the best and hope that you and your wonderful doctors hit on just the right treatments for you!
    Looking forward to being on the Cure Talk Panel show on the topic ‘Cancer and Nutrition’ on Friday, also.
    Take good care, have a nice lunch with your friend! I know what you mean about doctor’s visits being nerve wracking, since myeloma can shift and change. Hope your myeloma is really stable though! Cheers, Nancy

  4. Ron Harvot Says:

    Pat hope that feeling good along with greatly reduced pain translates into a good blood test!

    JC I use biking to reduce stress. I have bad knees and my lower back does not allow for running. Cycling is low inpact activiy but allows you to get your HR up. I find that it is easier to sleep after a workout as it relaxes you physically as well as mentally.

    Ron

  5. Pat Killingsworth Says:

    Thanks for the support, everyone! I don’t know how I could cope without exercising; agreed, its a great stress reliever. I’m home now. Long wait but uneventful. I’ll post an update as soon as I see my new number.

  6. Steve Says:

    Hey Pat….you’re not alone….January is going to be a bit of a “nail biter” for me as well and no doubt for many of our MM cohorts.

    I drew blood last week for SPEP, FLC etc for my quarterly review with one of my hem/oncs. Will have my annual PET/CT this week and depending on those results perhaps a BMB next week. I’ve been at .1 and .2 M spike for about a year so hoping those numbers don’t change….watching and waiting is difficult…so here’s to hoping for GREAT results for everyone this year on all of our tests!

  7. Pat Killingsworth Says:

    :)

  8. Linda Kaufman Says:

    For stress I do arthritis aerobics in the pool 3X a week and walk laps 3 more. My rotator cuffs are both torn so no swimming or weights. Helps with stress. Have my three month check Wednesday and if stable (since stem cell transplant in 2007), will need to discuss the 10 milligrams of Revlimid I’ve been on for 4 years. Gastro issues still send me to bathroom 5-10 times a day, more and more fatigue and neuropathy progressively worse–but I’m here!

  9. Pat Killingsworth Says:

    So glad you’re doing well, Linda! GI issues like yours are so inconvenient. It all is! Great attitude!

  10. Bob Mungenast Says:

    Hi Pat,

    Sending big prayers your way for positive results! This is the one aspect of the life of MM patients that people just don’t understand: the numbers game— waiting to hear what direction our m-spike has most recently decided to go. I hope you are coping with this easily enough.

    Pat, I’m so glad you are feeling well now. Just enjoy that, stay positive, and believe in your doctors.

  11. Pat Killingsworth Says:

    Thanks, Bob! Feeling good today; second off week.

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