Want to talk about Multiple Myeloma: Anyone else?

@tml Yes, you need to stand up and be your own advocate! when there is your health at stake. Don't take their scheduling as the right thing for you, if it is not. Because my oncologist was going to be gone over the Christmas holidays, and he didn't want anyone else to try to figure out my complicated case, we took an extra week off from the Revlimid. But other than that, it has been 3 weeks on, one week off since last August.

Good luck on the labs tomorrow!
Ginger

Having the labs tomorrow. Presume some data by early next week so hope can get by Friday when I am due to begin taking again. What a process! It means every month an issue plus Mayo cannot see my provider data so need to work that out. I know will have to deal with having some actual numbers that relate to the one Revlimid cycle. I said I would not look but probably will! Thanks for your email as it was helpful in me making sure I had the labs. I cannot just assume that they know or are doing. Very stressful.

I really need this medication. Probably should have done that today.

Guess will try. Problem is my doctor came back from maternity leave which meshes with older velcade series. Guess will leave a voicemail tomorrow and see if they will do early but hard to say since Mayo is doing the Revlimid but my local provider sets the tests based on their schedule.

@tml i have been on Revlimid since last August. My oncologist is 2 hours away from me. I have my appointments set up so I go in for labs at the cancer center the day after my last dose of Revlimid. The protocol is your bloodwork needs to be reviewed and signed off by your doctor, allowing the next round of medication. He approves it, sends the note to his nurse to contact the pharmacy and they call me to schedule the shipping to my house. For example, my last day this round is 30 March, appointment/labs on 31st, next round starts 7 April. There is a weekend in there to contend with, so I crunch things in close. The medication is delivered by overnight service from Texas, here to our little rural town.

Can you get the labs before the 7th?
Ginger

Sadly I am not too creative! I have been binge reading and ordered a new area rug for the living room! Guess I need something!

I can feel your frustration and I know this all seems to be moving at a snail’s pace. A slog, yes that’s a really good term!
I empathize because this is one of those situations that you just want behind you and you’re helpless to make it move along faster. But it is moving, in the right direction. So now’s the time to use some diversion tactics to wait it out! Didn’t you say your husband is an artist? There must be some art supplies around. Grab some waterproof pens, watercolor, brush and paper and let your creative side take over! The past few days I made a much of paper beads. Then yesterday I made journal for a friend’s birthday and used some of my silly beads to embellish it. Thankfully she’s not a perfectionist either! 🙃 What’s your creative outlet?

Cannot imagine 18 bags!!! Must have been a challenge. Know I need to be patient but the fact that I should have had the transplant last October galls me. I feel as if all this should have been unnecessary. I know, I am where I am…I need to follow your example!!! I know it is a slog really…a marathon not sprint!

Did see that Enoxaparin is better than Eliquis guess just how it is. Take the dexamethasone for 2 days around the velcade. Worried about getting my next shipment of Revlimid since the pharmacy said cannot reorder online plus might want labs before reissue. Not scheduled until the 7th for myeloma labs and should begin the next 21 days in the 8th!!! Ugh. Nothing is easy! I too took very little! I am stunned to look at all the pull bottles lined up!!! Just hoping for good results soon!!!

Oh, I remember the black and blue belly areas. Not very attractive, but it’s a pretty common side effect. No bikinis for you this summer! 🙃
I just read up on Enoxaparin and it has a good safety and side effect profile. Much kinder to the system than Warfarin.
There can be some bleeding at the injection site. Remember, it is thinning your blood to help prevent blood clots…which is more of a worry than tummy bruises. I promise, they’ll fade.
You may not be on it long term because it is being used in conjunction with the Revlimid and steroids. Are the steroids being tapered?
Truly, I know the frustration of being on so many meds that have side effects. I was a walking pharmacy after being diagnosed with AML and then the transplant. Before that, all I had in my medicine cabinet was Vit D3! So it was one heckuva shock to find it necessary to have a huge pill box! At one point during treatment, my husband counted; I had 18 IV bags piggy-backed feeding into 2 ports! You’re fighting a blood cancer and it’s going to take some strong meds to move you past this. Basically, inside your body is a war zone right now and you need the proper artillery to win this battle. ☺️ There will be some collateral damage. But our bodies are remarkable in resiliency. To look at me now you’d never know the toll those meds took at the time. But they got rid of the cancer and gave me a second chance at life. You’re shooting for that same goal!

When’s your next doctor’s appointment?