Hello,
I was diagnosed a few days ago. My oncologist has arranged for me to see a doctor at Johns Hopkins in Baltimore, MD, which I understand is a leading instituting for multiple myeloma research. The doctor will determine if I am a transplant candidate, and , I believe will determine which combination of chemo drugs will be right for me. I say that I believe because I was very upset during when I received my bone marrow biopsy results.
I have been a Type 1 diabetic for 45 years, and I take 5 shots daily. The oncologist said that chemo will include steroids, which will raise my blood sugars dramatically. Does anyone have experience with chemo drugs and insulin?
Thanks in advance for any replies. I am "shell shocked."
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9 posts
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Susan Penley - Name: Susan Penley
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: May 6, 2013
- Age at diagnosis: 55
Re: Type 1 Diabetes and Multiple Myeloma
Hi Susan,
Sorry to hear about your diagnosis, but I think this is the best place to start to find shared experiences. I was just recently diagnosed with MGUS, and am awaiting biopsy results to determine if I will remain with that diagnosis.
I don't have any experience with chemo drugs and effect on diabetes to share with you. I do have some experience with steroids (specifically prednisone). I don't have diabetes, but I have to take metformin now almost every time I am on prednisone for respiratory infections, but I am frequently on high tapers that start at 80 mg daily for seven days. It causes dramatic elevations in my blood sugar, so I have learned to monitor my blood sugar when I am on it.
I am so thankful it isn't something I have to live with daily, and my heart goes out to people like yourself that live with that disease on a daily basis. I have a friend with multiple sclerosis that takes low doses of prednisone daily, and has not had issue with her blood sugar. I suppose everyone reacts differently to it, that dosage has a lot to do with it, as well as existing medical conditions. I'm sure someone with experience with chemo and diabetes will come along and help with more information of the sort you are looking for.
Sorry to hear about your diagnosis, but I think this is the best place to start to find shared experiences. I was just recently diagnosed with MGUS, and am awaiting biopsy results to determine if I will remain with that diagnosis.
I don't have any experience with chemo drugs and effect on diabetes to share with you. I do have some experience with steroids (specifically prednisone). I don't have diabetes, but I have to take metformin now almost every time I am on prednisone for respiratory infections, but I am frequently on high tapers that start at 80 mg daily for seven days. It causes dramatic elevations in my blood sugar, so I have learned to monitor my blood sugar when I am on it.
I am so thankful it isn't something I have to live with daily, and my heart goes out to people like yourself that live with that disease on a daily basis. I have a friend with multiple sclerosis that takes low doses of prednisone daily, and has not had issue with her blood sugar. I suppose everyone reacts differently to it, that dosage has a lot to do with it, as well as existing medical conditions. I'm sure someone with experience with chemo and diabetes will come along and help with more information of the sort you are looking for.
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kristina - Name: Kristina
- Who do you know with myeloma?: MGUS
- When were you/they diagnosed?: April 25th 2013 KU Oncology Center
- Age at diagnosis: 38
Re: Type 1 Diabetes and Multiple Myeloma
Thank you so much for your reply, Kristina. Makes me feel a little less lonely.
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Susan Penley - Name: Susan Penley
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: May 6, 2013
- Age at diagnosis: 55
Re: Type 1 Diabetes and Multiple Myeloma
Hi Susan,
You might try posting your questions under the treatment or the multiple myeloma topics. More people might see and you might get a better response to your questions about treatment.
You might try posting your questions under the treatment or the multiple myeloma topics. More people might see and you might get a better response to your questions about treatment.
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kristina - Name: Kristina
- Who do you know with myeloma?: MGUS
- When were you/they diagnosed?: April 25th 2013 KU Oncology Center
- Age at diagnosis: 38
Re: Type 1 Diabetes and Multiple Myeloma
Hey Susan,
Sorry to hear about your diagnosis. The time right after diagnosis can certainly be unnerving. I was just there with smoldering myeloma a few months back. Do you know what stage you are at and if you have any CRAB symptoms (symptomatic)?
A lot of folks here can can help. Make sure the doc you see at John Hopkins sees many multiple myeloma patients each year. I'd also recommend getting a second opinion from a completely different organization just to get a balanced view of things. Getting in with a well heeled multiple myeloma specialist that lives and breathes this disease, and talking to folks with different points of view on treatment regiments is probably the most important thing you can do for your care.
Take time and do your homework. It will likely take a few weeks for you to wrap your head around this and to understand the disease and all the options out there. Chances are you likely don't have to rush into treatment, but I don't what your circumstances are. Diabetes does factor into the picture, as you may be more susceptible to kidney damage, which can be a complication of multiple myeloma.
Take care.
Sorry to hear about your diagnosis. The time right after diagnosis can certainly be unnerving. I was just there with smoldering myeloma a few months back. Do you know what stage you are at and if you have any CRAB symptoms (symptomatic)?
A lot of folks here can can help. Make sure the doc you see at John Hopkins sees many multiple myeloma patients each year. I'd also recommend getting a second opinion from a completely different organization just to get a balanced view of things. Getting in with a well heeled multiple myeloma specialist that lives and breathes this disease, and talking to folks with different points of view on treatment regiments is probably the most important thing you can do for your care.
Take time and do your homework. It will likely take a few weeks for you to wrap your head around this and to understand the disease and all the options out there. Chances are you likely don't have to rush into treatment, but I don't what your circumstances are. Diabetes does factor into the picture, as you may be more susceptible to kidney damage, which can be a complication of multiple myeloma.
Take care.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Type 1 Diabetes and Multiple Myeloma
Thanks for all the great info, Mountain Man. The oncologist said I have light chain multiple myeloma, no organ damage, compression fracture of the 12th vertebra (I'm almost 2 inches shorter), stage 1, and I'm missing a chromosome.
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Susan Penley - Name: Susan Penley
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: May 6, 2013
- Age at diagnosis: 55
Re: Type 1 Diabetes and Multiple Myeloma
We'll be sure to keep a look out for that missing chromosome 
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Type 1 Diabetes and Multiple Myeloma
Hi Susan,
I have had steroid-induced diabetes requiring insulin shots. It was only for a couple of months when I was on high doses of prednisolone (160 mg/day) to treat some acute graft versus host disease (GVHD). At most I was injecting 3x daily then as my pred dose was decreased, so too were the number of injections and the number of units I injected.
I am on a relatively low dose now (20 mg/day) and am no longer injecting, but I have to watch my diet. I take my pred with breakfast (it's low GI, high fibre) at ~7.30 and my blood glucose is ~ 5 mmol/L, 3 hours later it might be 6.5 but it continues to climb until early afternoon. You may need to increase the number of units you inject yourself with if you are going to be treated with steroids.
Dexamethasone is used in conjunction with a lot of other chemo agents. I have been told that the effect of dex is about 10x that of pred at the same dose - so my dose of pred at 160 mg is roughly equivalent to 16 mg of dex. Sometimes they will give 20 mg of dex with treatment and sometimes it will be 40. I would ask what is the lowest dose of dex you could take without compromising treatment.
All the best,
Libby
I have had steroid-induced diabetes requiring insulin shots. It was only for a couple of months when I was on high doses of prednisolone (160 mg/day) to treat some acute graft versus host disease (GVHD). At most I was injecting 3x daily then as my pred dose was decreased, so too were the number of injections and the number of units I injected.
I am on a relatively low dose now (20 mg/day) and am no longer injecting, but I have to watch my diet. I take my pred with breakfast (it's low GI, high fibre) at ~7.30 and my blood glucose is ~ 5 mmol/L, 3 hours later it might be 6.5 but it continues to climb until early afternoon. You may need to increase the number of units you inject yourself with if you are going to be treated with steroids.
Dexamethasone is used in conjunction with a lot of other chemo agents. I have been told that the effect of dex is about 10x that of pred at the same dose - so my dose of pred at 160 mg is roughly equivalent to 16 mg of dex. Sometimes they will give 20 mg of dex with treatment and sometimes it will be 40. I would ask what is the lowest dose of dex you could take without compromising treatment.
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: Type 1 Diabetes and Multiple Myeloma
Hi Susan,
I just read your post and would like to have a chat with you. I also have Type 1 diabetes and multiple myeloma that I was diagnosed with 3 months ago. I am still in shock and can empathize.
I realise your post was 2 years ago, so I am wondering how you are going with it all. I am currently on Velcade, cyclophosphamide, and dexamethasone. The dex put my blood sugar levels right up! I am on an insulin pump though so on the days that I had dex I just set my pump to 200%, which worked well.
I would love to hear back from you and I hope you are doing well.
Kind regards
Kirsty
I just read your post and would like to have a chat with you. I also have Type 1 diabetes and multiple myeloma that I was diagnosed with 3 months ago. I am still in shock and can empathize.
I realise your post was 2 years ago, so I am wondering how you are going with it all. I am currently on Velcade, cyclophosphamide, and dexamethasone. The dex put my blood sugar levels right up! I am on an insulin pump though so on the days that I had dex I just set my pump to 200%, which worked well.
I would love to hear back from you and I hope you are doing well.
Kind regards
Kirsty
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Kirsty - Name: Kirsty
- Who do you know with myeloma?: me
- When were you/they diagnosed?: February 2015
- Age at diagnosis: 44
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