Want to talk about Multiple Myeloma: Anyone else?

Posted by Frazer 1 @frazer1, Apr 11, 2012

Asking anyone who is going thru this experience to share any pro's or con's of this disease. As of now I'm in MGUS, will find our next week if it has progress to Smoldering Myeloma.

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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 !

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Profile picture for tml @tml

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.

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@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

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Profile picture for tml @tml

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.

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@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

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Profile picture for Ginger, Volunteer Mentor @gingerw

@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

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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.

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

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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.

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Profile picture for tml @tml

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!!!

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@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

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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!

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Profile picture for tml @tml

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!

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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?

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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!

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