Just a thread for stuff like this, in the 'treatment' area.
This morning I went in for the 'workup' blood tests for my SCT (22 vials! Didn't bother me any, but the poor phlebotomist was having quite a time sorting things out).
I already have some of the results: the creatinine clearance, the CBC......Oh, and I was relieved to find out that I'm not pregnant.
Now tell me: I realize that doctors have to cover their assets, but....I'm 64 (as of last Saturday). I went through menopause fourteen years ago and needed a bit of surgery then. I've been a widow for 20 years. I've been on the sort of chemo that's supposed to make you infertile for the last four months.
How much sense does it make to do a pregnancy test? I mean, really? My son is as likely to come up preggers.
Ah, well.
Anybody else got a 'what are they thinking?' comment?
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• Page 1 of 1
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dianaiad - Who do you know with myeloma?: Me
- When were you/they diagnosed?: Officially...March 2013
- Age at diagnosis: 63
Re: Things that make you go 'hmmn....'
Hi Dianaiad,
Take it as a complement - you must appear younger than your years
.
A friend here was diagnosed with breast cancer (extremely strong genetic link - both sides of her family) when she was pregnant with her second child. She had lots of chemo which was started when she was pregnant, double mastectomy. The baby was fine, doctors told her not to worry about contraception coz of all the chemo she'd had. But they didn't check her hormone levels coz she ending up having a third child.
All the best,
Libby
Take it as a complement - you must appear younger than your years
.A friend here was diagnosed with breast cancer (extremely strong genetic link - both sides of her family) when she was pregnant with her second child. She had lots of chemo which was started when she was pregnant, double mastectomy. The baby was fine, doctors told her not to worry about contraception coz of all the chemo she'd had. But they didn't check her hormone levels coz she ending up having a third child.
All the best,
Libby
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LibbyC - Name: LibbyC
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 2009
- Age at diagnosis: 43
Re: Things that make you go 'hmmn....'
Hi, Libby...
That's actually a lovely story...is your friend's name Elizabeth? Or Sarah? (grin) (bible joke, folks)
Since I belong to Kaiser and have access to many (if not all) my test results online at kp.org, I'm seeing some of the results of yesterday's tests....and danged if it doesn't look like I'm one of the healthiest 'high risk' multiple myeloma patients around!
OK, my cholesterol is riiiiiight on the borderline of 'oops,' but........
Now I have all the appointments set up for the rest of the workup, I'm getting my left eye 'fixed' today (cataract surgery) so I'll have 20/20 vision in both eyes, I have a GREAT smile (yanking out all your teeth and getting dentures will give you a great smile!)
............
All things considered, I'm way ahead of 'the game,' but....
nervous as a long-tailed cat in a room full of children on skateboards. Still ache from the BMB a week and a half ago (someone should recommend that procedure to the Inquisition) am looking forward to, and dreading, an 'arterial blood gas' (never had one of those, and whenever someone tells me 'it's going to sting a little,' I start getting v.e.r.y. suspicious) and of course the grand SCT.
I'm brave. I'm going to DO it, aren't I? I just wish I could be brave with style, y'know?
That's actually a lovely story...is your friend's name Elizabeth? Or Sarah? (grin) (bible joke, folks)
Since I belong to Kaiser and have access to many (if not all) my test results online at kp.org, I'm seeing some of the results of yesterday's tests....and danged if it doesn't look like I'm one of the healthiest 'high risk' multiple myeloma patients around!
OK, my cholesterol is riiiiiight on the borderline of 'oops,' but........
Now I have all the appointments set up for the rest of the workup, I'm getting my left eye 'fixed' today (cataract surgery) so I'll have 20/20 vision in both eyes, I have a GREAT smile (yanking out all your teeth and getting dentures will give you a great smile!)
............
All things considered, I'm way ahead of 'the game,' but....
nervous as a long-tailed cat in a room full of children on skateboards. Still ache from the BMB a week and a half ago (someone should recommend that procedure to the Inquisition) am looking forward to, and dreading, an 'arterial blood gas' (never had one of those, and whenever someone tells me 'it's going to sting a little,' I start getting v.e.r.y. suspicious) and of course the grand SCT.
I'm brave. I'm going to DO it, aren't I? I just wish I could be brave with style, y'know?
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dianaiad - Who do you know with myeloma?: Me
- When were you/they diagnosed?: Officially...March 2013
- Age at diagnosis: 63
Re: Things that make you go 'hmmn....'
You ARE brave with style, Dianalad, and I am wishing you all the best with your upcoming eye surgery and procedures. Thanks for sharing with your unique sense of humour! Glad to hear that you are quite healthy despite all of this. Did you ever get that second opinion?
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: Things that make you go 'hmmn....'
Dianalad, I haven't been reading all of your story over the last few months, and apologize for my remark about the second opinion. I am sure that you have checked out your options for treatment!
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: Things that make you go 'hmmn....'
Nancy Shamanna wrote:
> Dianalad, I haven't been reading all of your story over the last few
> months, and apologize for my remark about the second opinion. I am sure
> that you have checked out your options for treatment!
Oh, no need for an apology for that! Actually, I did get a second opinion, from Dr. Cai at the City of Hope. Both docs agree that I have multiple myeloma, that it's 'high risk' because of the P-17 deletion, and that I'm one very, very lucky woman to have caught it before it did major damage to my bones and only minor damage to my kidneys (which has pretty much reversed itself).
So...while they both tell me that the multiple myeloma is probably going to 'come back' faster than with those who don't have this chromosomal abnormality, if I keep on top of it, I'll have a fighting chance for a really good 'quality of life' for quite awhile.
No problems here with questions and all; shoot, I go to debate forums and argue with atheists. I can handle anything.
> Dianalad, I haven't been reading all of your story over the last few
> months, and apologize for my remark about the second opinion. I am sure
> that you have checked out your options for treatment!
Oh, no need for an apology for that! Actually, I did get a second opinion, from Dr. Cai at the City of Hope. Both docs agree that I have multiple myeloma, that it's 'high risk' because of the P-17 deletion, and that I'm one very, very lucky woman to have caught it before it did major damage to my bones and only minor damage to my kidneys (which has pretty much reversed itself).
So...while they both tell me that the multiple myeloma is probably going to 'come back' faster than with those who don't have this chromosomal abnormality, if I keep on top of it, I'll have a fighting chance for a really good 'quality of life' for quite awhile.
No problems here with questions and all; shoot, I go to debate forums and argue with atheists. I can handle anything.
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dianaiad - Who do you know with myeloma?: Me
- When were you/they diagnosed?: Officially...March 2013
- Age at diagnosis: 63
Re: Things that make you go 'hmmn....'
This reminds me of when I went in to have the apheresis catheter inserted prior to my stem cell harvest. The nurse who was doing my paperwork asked about the chances of my getting pregnant. I told her that I had been in menopause for over a year AND that my husband had had a vasectomy. She didn't ask anything more about it and they got me ready for the procedure.
As I was lying on the table, having already gotten the meds (Versed and something else I forget), with this tent thing sort of draped over me, and everyone prepped to do the procedure, someone did a final check of my paperwork and decided that oops, no, I should have had the pregnancy test done. A hurried phone call ensued and the decision was made that it would be OK if I just signed a waiver. So they thrust a clipboard under the tent and I signed (without my glasses on, so who knows what I wrote)
And since I have been on Revlimid maintenance, the same nurse comes in *every month* and reads me the script about having to use "protection" and so forth. We both kind of roll our eyes. However, finally, after two years of being in menopause, they did finally stop doing the pregnancy tests. It didn't really bother me that they were doing them, since they were just included among the many others I got each month. But it was kind of silly.
As I was lying on the table, having already gotten the meds (Versed and something else I forget), with this tent thing sort of draped over me, and everyone prepped to do the procedure, someone did a final check of my paperwork and decided that oops, no, I should have had the pregnancy test done. A hurried phone call ensued and the decision was made that it would be OK if I just signed a waiver. So they thrust a clipboard under the tent and I signed (without my glasses on, so who knows what I wrote)
And since I have been on Revlimid maintenance, the same nurse comes in *every month* and reads me the script about having to use "protection" and so forth. We both kind of roll our eyes. However, finally, after two years of being in menopause, they did finally stop doing the pregnancy tests. It didn't really bother me that they were doing them, since they were just included among the many others I got each month. But it was kind of silly.
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Karen - Name: Karen
- When were you/they diagnosed?: December 2010
- Age at diagnosis: 51
Re: Things that make you go 'hmmn....'
When I was having all of the testing done for the transplant I asked my oncologist why they did so many blood tests - pregnancy, antibodies to everything you could possibly imagine, etc. He said that it was part of the required protocol to maintain the licensing/certification to do the transplants from the National Cancer Institute. He also said that it alerted them to any special precautions that they might have to take with handling my specific blood products. But, then he said that most of the tests were really not needed since everyone was supposed to be following Universal Precautions all of the time with all blood products. He didn't think that all of the testing was a bad idea, but maybe not all of them are really necessary.
It cracks me up when they ask me when I had my last period. I always think of a year that sounds good because I don't remember. I remember that when it all stopped I just put it out of my mind as something that I didn't have to think about any more. When my oncologist was getting ready to start me on Revlimid he asked me if I planned on getting pregnant. Since I had been through menopause a few years earlier, I told him that I didn't plan on taking any hormones for that to happen. He had a good laugh over that one.
There are lots of 'hmmmm's....' with this diagnosis. Good luck with the transplant. Mine went really smoothly except for nausea. I went back to work 10 weeks after the transplant.
Nancy in Phila
It cracks me up when they ask me when I had my last period. I always think of a year that sounds good because I don't remember. I remember that when it all stopped I just put it out of my mind as something that I didn't have to think about any more. When my oncologist was getting ready to start me on Revlimid he asked me if I planned on getting pregnant. Since I had been through menopause a few years earlier, I told him that I didn't plan on taking any hormones for that to happen. He had a good laugh over that one.
There are lots of 'hmmmm's....' with this diagnosis. Good luck with the transplant. Mine went really smoothly except for nausea. I went back to work 10 weeks after the transplant.
Nancy in Phila
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NStewart - Name: Nancy Stewart
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 3/08
- Age at diagnosis: 60
Re: Things that make you go 'hmmn....'
Diana -
First, I want to wish you success with both the cataract surgery and the SCT. Keeping a sense of humor is important when dealing with the slog of myeloma treatment.
Here's a couple of things that made me go "hmmm":
1. I had a hysterectomy years before I was diagnosed with myeloma, which is documented in my medical records. Hopkins still asked me about whether I could be pregnant, although I don't remember if Hopkins waived the blood test before my SCT.
2. See #1. Every time I went through the required Celgene survey for continued approval to receive Revlimid, and every time I listened to the pharmacist script for my next prescription fill, I had to answer questions about whether I gave the Revlimid to someone who could become pregnant -- like anyone who needs teat very expensive medicine would give some away like it was a pain reliever!!!! -- or if I could be come pregnant. Every month, for more than two years, I listened -- sort of -- to that script!
3. I never had 22 vials of blood taken when I went through the SCT process, but I had either 9 or 11 vials taken one day. Then they would tell me I was anemic. Anyone else see the correlation?
4. On the day they took so many vials of blood, I asked the phlebotomy nurse why they needed so many. The answer was that the lab wanted a separate vial for each test. After that, I insisted they double up on tests per vial.
5. And the last "hmmm" -- The co-pay for thalidomide was significantly higher than the co-pay for Revlimid. Hmmm, I've always wondered if I was helping the manufacturer pay off its legal bills from 50 years ago.....
Dana
First, I want to wish you success with both the cataract surgery and the SCT. Keeping a sense of humor is important when dealing with the slog of myeloma treatment.
Here's a couple of things that made me go "hmmm":
1. I had a hysterectomy years before I was diagnosed with myeloma, which is documented in my medical records. Hopkins still asked me about whether I could be pregnant, although I don't remember if Hopkins waived the blood test before my SCT.
2. See #1. Every time I went through the required Celgene survey for continued approval to receive Revlimid, and every time I listened to the pharmacist script for my next prescription fill, I had to answer questions about whether I gave the Revlimid to someone who could become pregnant -- like anyone who needs teat very expensive medicine would give some away like it was a pain reliever!!!! -- or if I could be come pregnant. Every month, for more than two years, I listened -- sort of -- to that script!
3. I never had 22 vials of blood taken when I went through the SCT process, but I had either 9 or 11 vials taken one day. Then they would tell me I was anemic. Anyone else see the correlation?
4. On the day they took so many vials of blood, I asked the phlebotomy nurse why they needed so many. The answer was that the lab wanted a separate vial for each test. After that, I insisted they double up on tests per vial.
5. And the last "hmmm" -- The co-pay for thalidomide was significantly higher than the co-pay for Revlimid. Hmmm, I've always wondered if I was helping the manufacturer pay off its legal bills from 50 years ago.....
Dana
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darnold - Name: Dana Arnold
- Who do you know with myeloma?: self
- When were you/they diagnosed?: May 2009
- Age at diagnosis: 52
Re: Things that make you go 'hmmn....'
Thanks, Dana...don't you just love bureaucracy? (btw, I'm just turned 64, an English teacher, and I have finally figured out how to spell 'bureaucracy')
Update on the cataract surgery: the doc was worried a bit about my astigmatism...she said I might need glasses after surgery just for that. However, she said she'd try to ameliorate that by making the incision where the eye was out of shape (thus causing the astigmatism) and so relaxing it, a bit like having lasik.
Worked! I have 20/20 in one eye, and 20/15 in the other, and I can see things now that I have never, EVER been able to see clearly. I tell you, it's a whole different world out there. Yeah, yeah, I have to use reading glasses now to read and knit, and that's annoying, but hey.....you can get reading glasses by the three pack at WalMart for $12, and even Michaels has really cute ones for $3.
....and I can buy really cute, funny, odd, weird, classy SUNGLASSES to fit my mood.
Cool beans.
OK, so I'm a bit nervous about the SCT. Make that a lot nervous...but compared to so many of you who have written about your adventures in myeloma land, I'm having a vacation cruise.
RE the questions...I got them too, and imagine that I'll get them some more....and the nearest contact I have with someone who might possibly get pregnant is the nurse/dr/pharmacist handing me the medication everybody is worried about!
They'll still ask.
Update on the cataract surgery: the doc was worried a bit about my astigmatism...she said I might need glasses after surgery just for that. However, she said she'd try to ameliorate that by making the incision where the eye was out of shape (thus causing the astigmatism) and so relaxing it, a bit like having lasik.
Worked! I have 20/20 in one eye, and 20/15 in the other, and I can see things now that I have never, EVER been able to see clearly. I tell you, it's a whole different world out there. Yeah, yeah, I have to use reading glasses now to read and knit, and that's annoying, but hey.....you can get reading glasses by the three pack at WalMart for $12, and even Michaels has really cute ones for $3.
....and I can buy really cute, funny, odd, weird, classy SUNGLASSES to fit my mood.
Cool beans.
OK, so I'm a bit nervous about the SCT. Make that a lot nervous...but compared to so many of you who have written about your adventures in myeloma land, I'm having a vacation cruise.
RE the questions...I got them too, and imagine that I'll get them some more....and the nearest contact I have with someone who might possibly get pregnant is the nurse/dr/pharmacist handing me the medication everybody is worried about!
They'll still ask.
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dianaiad - Who do you know with myeloma?: Me
- When were you/they diagnosed?: Officially...March 2013
- Age at diagnosis: 63
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