Hi Cindy,
I experienced vertigo from sleeping in one position on a recliner following hip replacement. This caused calcium deposits to form in ear. I found a maneuver on web called "Epley Maneuver", shared same with my primary doctor who is D.O.. She was familiar with this and treated me. I had some relief but, as it can be done at home, I asked my helpful neighbor to assist me and we repeated maneuver. I was much better.
Please note this is only a treatment for "BPPV" (benign positional vertigo" and not for anything serious. If you try this, make sure you have help. You can also print out these instructions or watch on You Tube. Worked for me and may help you. Can't imagine what we did before computers.
Marti
P.S. - Search for Benign Positioning Vertigo Exercises
Forums
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smarty - Name: Marti
- Who do you know with myeloma?: myself Smoldering Myeloma
- When were you/they diagnosed?: May 1, 2015
- Age at diagnosis: 76
Re: My mini-allo transplant journey
Cindy,
Hope you are nearing the end of your time in Seattle and almost back to California. Hang in there!
Brent
Hope you are nearing the end of your time in Seattle and almost back to California. Hang in there!
Brent
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Brent
Re: My mini-allo transplant journey
I am home and it is Day 108! I flew home on Day 100, and it is great to be here. I saw my local oncologist yesterday, and my white counts are finally improving, which is most likely due to dropping the MMF on July 15. It was 3.8 yesterday, which is high for me 
I will start my cyclosporine taper today and it will be done December 1st (talk about a slow taper).
I still have the large hematoma from my July 8 bone marrow biopsy (BMB), and they feel it will take a couple months to resolve. I would not recommend Lovenox shots right after a BMB.
I will start my Revlimid maintenance in about a month. I still have mixed feelings about that, as it increases the chances of GVHD, but if it knocks out the persistent myeloma and amyloid cells, then it will have been a good choice. I will have to wait and see.
I "cured" my vertigo Sunday night by doing the Epley maneuver at home. Amazing. I am mostly excited because now I can cancel my ENT appointment - I was concerned about the germs going there as there typically are a lot of little kids.
I will continue to keep you posted!
Cindy
I will start my cyclosporine taper today and it will be done December 1st (talk about a slow taper).I still have the large hematoma from my July 8 bone marrow biopsy (BMB), and they feel it will take a couple months to resolve. I would not recommend Lovenox shots right after a BMB.
I will start my Revlimid maintenance in about a month. I still have mixed feelings about that, as it increases the chances of GVHD, but if it knocks out the persistent myeloma and amyloid cells, then it will have been a good choice. I will have to wait and see.
I "cured" my vertigo Sunday night by doing the Epley maneuver at home. Amazing. I am mostly excited because now I can cancel my ENT appointment - I was concerned about the germs going there as there typically are a lot of little kids.
I will continue to keep you posted!
Cindy
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CindyBrown - Name: Cindy Brown
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 4/26/14
- Age at diagnosis: 48
Re: My mini-allo transplant journey
Congratulations on being back home! It is a great feeling when you get back home. While I am glad to hear that you are "cured" of the vertigo, I am looking forward to the post in 5 years that says you are functionally cured of the myeloma! Nobody deserves that outcome more than you. You have maintained a great attitude despite all of the challenges that have come your way.
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Mark11
Re: My mini-allo transplant journey
I am not quite at the 6 month post allo but I had my biopsy this week. No myeloma detected, even on flow!
Despite that, my kappa free light chains rose from 3 to 27 in the last few months. My oncologist is not concerned but will measure them every 12 weeks. Any insights on that?
I am still immunosuppressed but tapering off the cyclosporine. I started maintenance Revlimid yesterday. I hope by April I can consider a drug holiday and really see what the allo did for me.
Despite that, my kappa free light chains rose from 3 to 27 in the last few months. My oncologist is not concerned but will measure them every 12 weeks. Any insights on that?
I am still immunosuppressed but tapering off the cyclosporine. I started maintenance Revlimid yesterday. I hope by April I can consider a drug holiday and really see what the allo did for me.
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CindyBrown - Name: Cindy Brown
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 4/26/14
- Age at diagnosis: 48
Re: My mini-allo transplant journey
Cindy:
Great news!! I hope the great news continues for a long, long time.
Regards, JPC
Great news!! I hope the great news continues for a long, long time.
Regards, JPC
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JPC - Name: JPC
Re: My mini-allo transplant journey
Great news! Being MRD negative after transplant is Step 1 to getting where you want to be.
After transplant I was under the impression they look at ratios as opposed to absolute values. You should get in contact with the doctors at SCCA if you are concerned.
You have to remember the main benefits of an allo transplant are the long term benefits. One of the main benefits IMO of immunotherapy is knowing it is your (or in our case our donors) immune system that is keeping you in remission as opposed to drugs. There was an article I had read recently that mostly discusses immunotherapy for melanoma and they feature a patient that has been in remission. for 15 years. The last paragraph describes how I felt starting roughly 3.5 years after my transplant. It is a great feeling to get to this point, but it takes time to get off the anti-rejection meds and for the donor immune system to get up to full strength.
"As for his own melanoma, Gorman goes for scans to look for new tumours every two years. In February, he noted that it might be time to schedule his next set of scans. But he wasn't sure — he had stopped fearing his cancer's return years ago. “I'm a cool cucumber now,” he says. “My immune system has it under control.” "
http://www.nature.com/news/cancer-treatment-the-killer-within-1.14955
After transplant I was under the impression they look at ratios as opposed to absolute values. You should get in contact with the doctors at SCCA if you are concerned.
You have to remember the main benefits of an allo transplant are the long term benefits. One of the main benefits IMO of immunotherapy is knowing it is your (or in our case our donors) immune system that is keeping you in remission as opposed to drugs. There was an article I had read recently that mostly discusses immunotherapy for melanoma and they feature a patient that has been in remission. for 15 years. The last paragraph describes how I felt starting roughly 3.5 years after my transplant. It is a great feeling to get to this point, but it takes time to get off the anti-rejection meds and for the donor immune system to get up to full strength.
"As for his own melanoma, Gorman goes for scans to look for new tumours every two years. In February, he noted that it might be time to schedule his next set of scans. But he wasn't sure — he had stopped fearing his cancer's return years ago. “I'm a cool cucumber now,” he says. “My immune system has it under control.” "
http://www.nature.com/news/cancer-treatment-the-killer-within-1.14955
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Mark11
Re: My mini-allo transplant journey
Cindy-
It's good to here that things are continuing to go in the right direction. Keep getting stronger and adjusting to your new immune system.
Nancy in Phila
It's good to here that things are continuing to go in the right direction. Keep getting stronger and adjusting to your new immune system.
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: My mini-allo transplant journey
Thank you so much for the update, Cindy. I have been wondering how you have been doing, so I was really pleased to see your update. I am even more pleased to hear the good news about the response you've achieved so far to your transplant.
I defer to Mark when it comes to issues like what to expect after an allo transplant. He's really the expert. I would also have expected, however, that your doctors would be focusing more on your free light chain ratio, rather than the individual kappa or lambda levels.
Good luck!
I defer to Mark when it comes to issues like what to expect after an allo transplant. He's really the expert. I would also have expected, however, that your doctors would be focusing more on your free light chain ratio, rather than the individual kappa or lambda levels.
Good luck!
Re: My mini-allo transplant journey
Excellent news, Cindy! That's great that you are MRD negative at this point. Keep that up, and keep getting stronger.
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mikeb - Name: mikeb
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 2009 (MGUS at that time)
- Age at diagnosis: 55
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