To Dex With Love

It's Monday, it's only 8mg of Dex, it's currently 23:58 AND I'M WIDE AWAKE.

More important, my flaxseed oil wasn't as successful as it was last week and I've even taken to a full 16oz glass of prune juice at dinner (and still no success).  But I just realized I haven't even taken my night-time meds and probably need to do that now!  But for those of you awake and bored, I've not much to report beyond my lack of sleep.  Should be a wonder at work tomorrow.  Perhaps I'll get up bright and early and work out (and perhaps I'll win the lottery as well!)

Good night for now!

The Drugs and What to Expect

One of the recurring themes in my posts is getting caught by surprise when something expected doesn't go the way you expected!  Specifically, the drugs you're given and your reactions to them.  I created a page on my site called The Drugs and What to Expect that's outlined my experiences.  I'm hoping that people just getting into this mess find it useful but I'm also looking for feedback for those that have had other effects.  Being I'm using an "off the shelf" blog template I may not be able to do this effectively but at least I can gauge response and determine if I need to do something differently then.

I've not gotten everything in yet but I've tried to capture as much as possible and will continue to fill in when able.  Please provide feedback (and in the case of Beth, pictures!) where possible.    Hopefully this will prove helpful to others as well.  Please also indicate dosages as that may be of relevance (dependent upon age, current bloodwork status, etc.)

I'll leave everyone on a quick tip to combat the C word!  Flaxseed Oil, 10o0mg (or is it mcg)!  It's been the solution!!!  I am also taking "SennaCot" or similar name, which is a mix of Senna and Colace (50mg).  Two of those as night and the Flaxseed Oil during the day and aside from two days this week I've been business as usual! :)

On that note....

Dexa-ticipation!

Last Monday, a week late, I started my next cycle of Rev/Dex.  Sunday, knowing that Monday will bring a fairly sleepless night and the onset of consta...nevermind, I got into bed, just before 10, looking forward to a full night's rest.  At 1240 I put my book down, finally tired enough to go to sleep.  At 1241 my daughter came into our room - I had to bring her back to her room and BAM, I'm wide awake.  0130 I finally was able to get down to sleep.

The bad news?  I didn't start the Dex till the NEXT day!

Other than that, I've not had any real issues.  As this is the first week of the cycle (25mg of Rev) I got the reaction a bit earlier than normal.  On Thursday I had the red head, eyes and ears - and the itch!  Today (Friday) is a bit of the same, a bit less red.

I've successfully scheduled an appt at Mt Sinai (Ruttenberg Cancer Center) but it was a bit tough as everyone was just getting started but then I met Gladys and my life is saved! :)   At first I was a bit worried but then Gladys came onto the scene and set everything up.  I think she realized the mess and wanted to make sure everything was working smoothly (even though most people answering the phone weren't even sure who the doctor was!)

Short one for now - thanks for reading.

Too Busy To Comment

My last doctor's visit was 28th of May.  In general, all is well.  I've been so busy I've not had the opportunity to call SVCCC and request copies of my bloodwork but my IGA and Lambda levels are good and I still have no M-spike.  The immunofixation still identifies the fact the disease is there but there's nothing else showing it's a problem.   After my prior visit (and in one of my previous posts) I had backed down on my Lyrica dosage just due to the fact that I couldn't remember to take my afternoon med (compliments to the boss man for setting up a recurring email that hits me at 1230 each day with my quote, "...as I can't seem to remember to take my afternoon pill.")  I'm now officially dropped the Lyrica to 200mg and have also dropped the Nortrip to 10mg.  Having done that, I'm noticing a numbness and cold in my feet but thankfully no pain.  I'm not noticing any increase in my ability to get up and workout...but I'm still trying!  I will update a post with actual numbers but suffice it to say things are good and normal.  

The interesting news is the change in hospitals.  For those in The City, you've heard that St Vincent's Hospital has gone bankrupt.  I may have mentioned this before, but in addition to being the primary hospital for Sept 11 victims, it was St Vincent's that took care of all the Titanic victims as well.  A piece of history lost (and a big impact on the neighborhood.)  The good news is St Vincent's Cancer Care Center wasn't directly affected by the bankruptcy (they weren't directly attached to the hospital).  The bad news is, they were affected and SVCCC will now be under Beth Israel.  The further bad news is that BI doesn't have any direct MM related research, doesn't have transplant beds, etc.  So I received three letters.  1) Dr's Jagannath and Chari were both moving to Mount Sinai Hospital.  2) Dr Mazumder (who headed up the Sushi protocol) is moving to NYU and 3) Mt Sinai will be taking over care of my 19million frozen stem cells.  After a very quick consultation with DFCI, I'm heading to Mt Sinai for future work.  Crain's Business News had a quick story on Dr J going to MtS which helped solidify the decision.  Additionally, Dr Chari explained that MtS had a growing research group and was looking forward to building a first class MM group with grants coming in, so this is good news.  The bad news is the commute is longer, sending me back up to the hold 'hood, the UES (bordering more on Spanish Harlem).  

The interesting piece was getting my appointment on 28th May.  The letter stated that after 28th May all appointments would take place at MtS.  I confirmed my appointment on the Tuesday prior only to get a message on my home phone (after numerous times trying to tell them they needed to call my mobile) saying my appointment needed to be Thursday now.  Only problem - I was in San Francisco and wasn't returning till late Thursday (and got the message late Friday eve.)  After a few frantic phone calls and emails, I received a call (this time on my mobile) as I was buckling my seat belt on the plane.  Confirming I COULD come in on Friday.  The visit was fine but you could tell everything was changing.  The good news (more good news) was the people I most liked at SVCCC seemed to be coming to MtS.  Now I have to confirm all my medical records have been released to MtS and will have to make my next appointment.  And since that Friday was everyone's last day, nobody seemed to be present which caused me to not get my Rev script till Wednesday evening, where I was supposed to start on Monday.  So I'll be a week delayed in starting that but again, things are good so i can't complain!

Enough for now.

(and glad to see that Mike's back from the hospital and commenting on his blog!)