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Valley of the Sun Quilters   Off-Topic Chat

Started 8/20/15 by KSCarolyn; 1836745 views.
lppenguins

From: lppenguins

Apr-17

Thanks Cathy, just being patient. I know that’s not like me. I move a mile a minute but I can’t do a thing so I’m keeping busy with my Sidney. One smile from him clears my mind. 

lppenguins

From: lppenguins

Apr-17

Thanks so much Ami, hopefully you’ll have good summer weather at your new place this summer.

Yup looking forward to t-shirts and shorts weather. 

Suze (casuzenn)

From: Suze (casuzenn)

Apr-18

lppenguins said:

how is your treatment coming?

well...it is kicking my butt...but seems to be working. I have had enough time to see the patterns of how my body reacts so I am devising strategies to deal with the side effects. Cycles are 21 days - 14 days of taking the main med, then 7 days off - also during the 14 days on - I get 4 shots of an immunomodulator - Mondays and Thursdays and that has the same rest period as the main medication. I take a high dose of steroid once a week and...gah...that has the WORST side effects AND..I have to take that even on the resting week.

Just when you start to feel a bit better, the cycle starts all over again. Saturdays and Sundays are relatively side effect free, Mondays and Tuesdays are just so-so, Wednesdays are the worst day (I have to eat something every hour or my blood sugar goes straight out the window), Thursdays and Fridays are a wee bit better , but still have major issues.

My M-Spike is lower so that is good - it was 0.75 last week before cycle 3 started. 

It turns out I have a couple of genetic abnormalities that they detected when they did a bone marrow biopsy on me - translocation of genes 11 and 14 and something called a monosomy on gene 13...  what that means, I am not too sure. But these abnormalities seem to be pretty common amongst those with Multiple Myeloma..

Did they do a bone marrow biopsy on you? 

Suze so sorry you feel so bad so much of the time. Praying for you.

I still need to mail you now well traveled blocks. The fabric went to the retreat with me. I finally got them sewn back in Colorado. Took them with me on my trip to New Mexico but did not get them in the mail. Now back in Colorado...will try to get them out this week.....sounds like you need some cheer.

You mean like now? (it's in the upper 60's, low 70's here during the day!) Yippee for no pants!

Pirate (PIRATE_SR)

From: Pirate (PIRATE_SR)

Apr-18

Mel Harris (MelHarris1) said:

Yippee for no pants!

TMI there, Mel.  :-)

bornblesse2

From: bornblesse2

Apr-18

Oh Suze, that treatment does not sound fun.  The couple times I had to do steroids, I did not do well with the side effects.  I hope you can rest as much as possible to let your body heal and keep strength.

Pirate (PIRATE_SR) said...

Yippee for no pants!

TMI there, Mel.  :-)

LOL!!! I meant shorts vs pants... No pants! :P 

LindaPutt

From: LindaPutt

Apr-19

I hope you get some answers soon.  Waiting is so hard.  Thinking of you!

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