Want to talk about Multiple Myeloma: Anyone else?

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!

@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

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.

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

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.

@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

@tml
Are you saying that "Mayo cannot see my provider data so need to work that out." because your local is not sending it? Or do you mean that the report is NOT getting to Mayo?
For 13 years I've had trouble getting my labs sent to / received by Mayo. I don't know where the glitch is. So I now pickup my lab results in person, and then scan them into a message to my Nurse Coordinator via my patient portal. It saves me and Mayo a lot of time, and I know that the labs have arrived where they need to be. There have been some occasions when Mayo has contacted my hospital records department to get wht they need.

Here is an odd circumstance that I encountered: Mayo's area code is 507, and Louisville KY's area code is 502. Being in Kentucky, I have even discovered that the lab has been sent to the wrong fax area code YIKES. Somebody needs to get their eyes checked!

It is stressful, but try to let your doctors handle the stressful things that worry you. They have spent years preparing for this. Try to focus on one day at a time and do what they tell you to do 😉
Hugs

Yes they asked them to be faxed so passed that in. Sadly when I asked it they could be uploaded to the affiliated provider, she seemed to think I was going there tomorrow and sent me copies to take. I saw the email late and so said not so. This is such a challenge! Hope I can clear up tomorrow. When they moved into the hospital’s new outpatient building they had to move to their portal so some data in one place and done in the other. What a mess! Gosh! Hope no issue with faxing! Never thought about problems with area codes. It never seems to end. As soon as I think things are on track, another issue !

Good luck on your labs today!
Monthly, no matter where I am, home or when we travel, I need to have blood draws. I’ve not had any issues having the results faxed to Mayo from the clinics. All I needed for the labs to be sent were the direct fax number for my specific department at Mayo, the doctor’s name and Mayo Pt number. All the bloodwork results were faxed over without problems.
So I hope all of yours go through today.
I know you don’t want to check the numbers but I know you will. 🙃
Will you let me know how you’re doing?

Sure! Will do!