Good luck, Diana! I am sorry that you have run into some glitches with the transplant prep. The wildfires looked terrible, as we saw them on TV news footage. We have had a lot of wildfires in the national parks and forested areas in B.C. and even Alberta, and the smoke is bad...people with respiratory problems are urged to stay indoors.
Probably you can ask the transplant doctor for a copy of the MRI report. I don't know if actually looking at the CD of the MRI would be meaningful if not interpreted, so maybe you could ask her to sit down with you and go over it, if you want to. I just read the reports of my skeletal X-ray surveys, am a little squeamish to see the lytic lesions, and just want to know if they are still stable and not having any new ones either. I recently asked the surgeon about the mammograms I had as a followup to breast cancer what it showed, and he explained that to me. The radiation treatments I had has caused some changes in the tissue, but that is usual. I find that my doctors actually like to answer questions since it shows that the patient is interested in what they do.
And when the doctor said your kidneys are 'good enough', I would also ask for an explanation. For example, how are the results on your blood tests of the creatinine and any other tests which might indicate kidney function. Ditto your swollen ankles, ask for medical advice on those. So that would be my opinion anyways. Wishing you all the best!
Forums
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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: Diana's second stem cell transplant
Thanks, Nancy!
Actually, I'm afraid I'm a bit of a pest to my doctors. I'm "that' patient. You know the one, who keeps asking question after question when he has two other patients in two rooms down the hall?
Ah, well. As to the MRI images, I'll have to admit that I haven't got a clue what they show, except that, yup, there's a brain there. I think. Maybe.
My GFR did a real nose dive for the pre-transplant tests, from above 90 to 77. Now *I* didn't think that was good news, but the doctor said that was 'good enough,' so I guess it's "good enough." Mind you, all those blood tests were taken on the Monday of my last week of treatment, so I rather expect that most of 'em are affected by that.
I'll just have to trust the doctors. When I'm at the transplant center, I hope that I can snag the doctors and / or nurses as they hurry by. Maybe if I plan just one question per 'pass by,' that'll work? I mean, then I'll have a captive audience.
Wait.
No.
I'll be the captive audience. Time to rethink my strategy.
Actually, I'm afraid I'm a bit of a pest to my doctors. I'm "that' patient. You know the one, who keeps asking question after question when he has two other patients in two rooms down the hall?
Ah, well. As to the MRI images, I'll have to admit that I haven't got a clue what they show, except that, yup, there's a brain there. I think. Maybe.
My GFR did a real nose dive for the pre-transplant tests, from above 90 to 77. Now *I* didn't think that was good news, but the doctor said that was 'good enough,' so I guess it's "good enough." Mind you, all those blood tests were taken on the Monday of my last week of treatment, so I rather expect that most of 'em are affected by that.
I'll just have to trust the doctors. When I'm at the transplant center, I hope that I can snag the doctors and / or nurses as they hurry by. Maybe if I plan just one question per 'pass by,' that'll work? I mean, then I'll have a captive audience.
Wait.
No.
I'll be the captive audience. Time to rethink my strategy.
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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: Diana's second stem cell transplant
Thanks for the reply, Diana!
It is difficult sometimes to read between the lines and one can't know all of the factors involved in treatment. Good to know you ask lots of questions. Me too! I write down questions and then refer to my list sometimes when having an appointment. I know that at least 15 - 20 mins is allotted for an appointment, but more time if needed (that's why the appointments often run late; some patients need a lot more time to discuss their health issues). I don't mind asking a reasonable amount of questions though! I also quiz out the oncology nurse ahead of the appointment, and she or he will go over my test results with me.
Good luck. We readers are wishing you all the best, I know.
It is difficult sometimes to read between the lines and one can't know all of the factors involved in treatment. Good to know you ask lots of questions. Me too! I write down questions and then refer to my list sometimes when having an appointment. I know that at least 15 - 20 mins is allotted for an appointment, but more time if needed (that's why the appointments often run late; some patients need a lot more time to discuss their health issues). I don't mind asking a reasonable amount of questions though! I also quiz out the oncology nurse ahead of the appointment, and she or he will go over my test results with me.
Good luck. We readers are wishing you all the best, I know.
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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: Diana's second stem cell transplant
September 10, 2017 Update
OK, it's the night before admission. Tomorrow I go to the transplant center and get 'settled in.' They will put in the central line sometime after I get to my room. Tuesday is chemo day, and Wednesday is transplant day: "Day 1."
I'm almost all packed, we've had the big party celebrating my folks' 70th wedding anniversary, three birthdays, one birth, and two weddings. We've had the 'four generation' pictures, with Mom (89), my sister (59), my niece (25) and my grandniece (three weeks). We've had the cake and the toasts (with Sprite) and the food.
And I sent my dog off to stay with my daughter. I had to see him (his name is Dobby and he looks just as scruffy as that stupid house-elf in Harry Potter) in a very small carrier and taken to the car. He doesn't know why I put him in there. He doesn't know that the doctors won't let him be around me for a good long time. He was scared.
I hated it. If anything could have prompted me to call the transplant center and say 'never mind", that would have done it. My gosh, when I first rescued him from the pound last winter, he was so frightened and anti-social that we had to get HIM a service animal! We got a kitten just for him, so that he could calm down and just grow up, and I couldn't send the cat with him tonight, even though she tried her level best to get him out of the carrier before everybody could leave.
(sniff)
OK, I'm back. I'm not all right, but I'm back.
Everybody in the family has given me a hug, a kiss,"good luck' and 'we'll pray for you", and the ladies of my a capella singing group sent me a wonderful card and a lap quilt that I AM taking with me!
Well, here's to the 'next great adventure.'
OK, it's the night before admission. Tomorrow I go to the transplant center and get 'settled in.' They will put in the central line sometime after I get to my room. Tuesday is chemo day, and Wednesday is transplant day: "Day 1."
I'm almost all packed, we've had the big party celebrating my folks' 70th wedding anniversary, three birthdays, one birth, and two weddings. We've had the 'four generation' pictures, with Mom (89), my sister (59), my niece (25) and my grandniece (three weeks). We've had the cake and the toasts (with Sprite) and the food.
And I sent my dog off to stay with my daughter. I had to see him (his name is Dobby and he looks just as scruffy as that stupid house-elf in Harry Potter) in a very small carrier and taken to the car. He doesn't know why I put him in there. He doesn't know that the doctors won't let him be around me for a good long time. He was scared.
I hated it. If anything could have prompted me to call the transplant center and say 'never mind", that would have done it. My gosh, when I first rescued him from the pound last winter, he was so frightened and anti-social that we had to get HIM a service animal! We got a kitten just for him, so that he could calm down and just grow up, and I couldn't send the cat with him tonight, even though she tried her level best to get him out of the carrier before everybody could leave.
(sniff)
OK, I'm back. I'm not all right, but I'm back.
Everybody in the family has given me a hug, a kiss,"good luck' and 'we'll pray for you", and the ladies of my a capella singing group sent me a wonderful card and a lap quilt that I AM taking with me!
Well, here's to the 'next great adventure.'
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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: Diana's second stem cell transplant
Diana,
I have been following your good humored and funny posts for a long time. Praying for you for an easy transplant, a stringent complete response and a rapid recovery. You are a role model for many of us on the forum. Good luck!
XOXO
I have been following your good humored and funny posts for a long time. Praying for you for an easy transplant, a stringent complete response and a rapid recovery. You are a role model for many of us on the forum. Good luck!
XOXO
Re: Diana's second stem cell transplant
Good luck Diana. Love the way you write by the way. Hope you will go through the transplant smoothly
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Pauillac - Name: Louise Rose
- Who do you know with myeloma?: my wife
- When were you/they diagnosed?: March 2017
- Age at diagnosis: 42
Re: Diana's second stem cell transplant
September 13, 2017 Update (My Third Birthday)
Well, I’m at the transplant center. Third day. Transplant Day. I’ve been very busy; for instance, this morning I had the occupational therapist, the physical therapist, the recreational therapist, my transplant doctor, my sister, all coming one after the other like beads on a string. Taking the cognitive test was fun, and so was the interaction with everybody else. It kept my mind off of the mild nausea I am beginning to experience. But let’s back track.
Monday: I called at 10 a.m. to hospital admitting to see if they had a bed for me. I remember this from last time, when I showed up at 10 in the morning and had to wait until 6 p.m. for a bed to be readied for me. When I called, I mentioned that my appointment was at two, and did they think they would have a bed ready for me then? I was told NOT to come in at 2, because there was no room ready: that I should wait and they’d call me when there was something available. OK, I was good with that. My sister promised to treat me to a pedicure before we left.
So, I finished loading the car, and we went for that mani/pedi, and the hospital called me in the middle of the manicure. “The room is ready. You can come now.” This was at 11 a.m. I didn’t tell them I was in the middle of having my nails done, but I DID let them know I was about three hours away. They were fine with that. Wheew.
We got there and the forum was crowded with patients from another wing. Seems that someone had smelled a gas leak and all the patients had been evacuated. This was on 9/11, and everybody was being extra paranoid, I suppose.
However, everyone was extremely sweet, and got me upstairs very quickly. I was told that I would have a central line in my neck that evening, but my doctor decided that I needed a line in my femoral vein, instead. In the groin. Ick. The good news is that it won’t be there long; they’ll remove it right after the transplant.
Chemo day: They gave me the chemo through my port; the only reason I need a different line is for the stem cells. They’ll do everything else through my port. Happy days! Chemo was easy; I went through a pitcher of ice, three sherbets, and two popsicles. No nausea or unhappiness at all with that, and no nausea the rest of the day. It was a good day. I even walked a mile and earned my ‘foot’ charm!
Transplant day; Not happened yet, but within about half an hour. A wee bit of nausea today, but nothing that Zofran (ondansetron) and all the other stuff they hand me can’t handle. They will remove that line from my groin right after the stem cell infusion, and then who knows what comes next? I don’t.
On thing: I am being treated like an empress. A five star hotel with needles. I even have my own fitness trainer! Not sure what to think about that particular amenity, mind you, but she’s been in here bugging me frequently. The recreational therapist is floating ideas involving me teaching others to knit. Ah.
Well, no jokes from me to day. I’m too busy to think of any.
Well, I’m at the transplant center. Third day. Transplant Day. I’ve been very busy; for instance, this morning I had the occupational therapist, the physical therapist, the recreational therapist, my transplant doctor, my sister, all coming one after the other like beads on a string. Taking the cognitive test was fun, and so was the interaction with everybody else. It kept my mind off of the mild nausea I am beginning to experience. But let’s back track.
Monday: I called at 10 a.m. to hospital admitting to see if they had a bed for me. I remember this from last time, when I showed up at 10 in the morning and had to wait until 6 p.m. for a bed to be readied for me. When I called, I mentioned that my appointment was at two, and did they think they would have a bed ready for me then? I was told NOT to come in at 2, because there was no room ready: that I should wait and they’d call me when there was something available. OK, I was good with that. My sister promised to treat me to a pedicure before we left.
So, I finished loading the car, and we went for that mani/pedi, and the hospital called me in the middle of the manicure. “The room is ready. You can come now.” This was at 11 a.m. I didn’t tell them I was in the middle of having my nails done, but I DID let them know I was about three hours away. They were fine with that. Wheew.
We got there and the forum was crowded with patients from another wing. Seems that someone had smelled a gas leak and all the patients had been evacuated. This was on 9/11, and everybody was being extra paranoid, I suppose.
However, everyone was extremely sweet, and got me upstairs very quickly. I was told that I would have a central line in my neck that evening, but my doctor decided that I needed a line in my femoral vein, instead. In the groin. Ick. The good news is that it won’t be there long; they’ll remove it right after the transplant.
Chemo day: They gave me the chemo through my port; the only reason I need a different line is for the stem cells. They’ll do everything else through my port. Happy days! Chemo was easy; I went through a pitcher of ice, three sherbets, and two popsicles. No nausea or unhappiness at all with that, and no nausea the rest of the day. It was a good day. I even walked a mile and earned my ‘foot’ charm!
Transplant day; Not happened yet, but within about half an hour. A wee bit of nausea today, but nothing that Zofran (ondansetron) and all the other stuff they hand me can’t handle. They will remove that line from my groin right after the stem cell infusion, and then who knows what comes next? I don’t.
On thing: I am being treated like an empress. A five star hotel with needles. I even have my own fitness trainer! Not sure what to think about that particular amenity, mind you, but she’s been in here bugging me frequently. The recreational therapist is floating ideas involving me teaching others to knit. Ah.
Well, no jokes from me to day. I’m too busy to think of any.
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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: Diana's second stem cell transplant
Diana,
Best of luck to you. I will be coming down to the hospital next week myself for my 100 day post transplant visit. You're in great hands there as you already know. I found that I ask tons of questions like yourself. I know that doctors only have so much time per patient. So what I did was print out all my questions. Two copies. One for my doctor, and one for myself. I just hand him a copy and he answers each question. And I write down his answers. It helps streamline my visits.
Castaway
Best of luck to you. I will be coming down to the hospital next week myself for my 100 day post transplant visit. You're in great hands there as you already know. I found that I ask tons of questions like yourself. I know that doctors only have so much time per patient. So what I did was print out all my questions. Two copies. One for my doctor, and one for myself. I just hand him a copy and he answers each question. And I write down his answers. It helps streamline my visits.
Castaway
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Castaway - Name: George
- Who do you know with myeloma?: just myself
- When were you/they diagnosed?: 1/24/14
- Age at diagnosis: 62
Re: Diana's second stem cell transplant
Diana,
You are a.m.a.z.i.n.g. I'm facing my first stem cell transplant shortly, and your attitude and strength raise my spirits and determination. I suspect you are digging deep today and through this week. You can do this! I will, too. Wishing you all the best!
You are a.m.a.z.i.n.g. I'm facing my first stem cell transplant shortly, and your attitude and strength raise my spirits and determination. I suspect you are digging deep today and through this week. You can do this! I will, too. Wishing you all the best!
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Rita USA
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