Hello everyone. My name is Dan, and my Mom has Multiple Myeloma. I was going to ask some specific questions, but I decided not to, as I do not want to bias any replies that I might recieve. I am just hoping that those of you with experience can chime in with your thoughts and feedback on my Mom's situation, so that I can get a feel for where we are, and what to expect.
Mom was very sick throughout 2011, but was mishandled by her GP, and diagnosed very late in the progression of her disease. She was told that she was "Stage 3" when she was finally diagnosed.
She was ultimately diagnosed with advanced myleoma in late 2011. Her light chains were over 1100.
She went on Velcade and Dex, and within 3 months her light chains were at 11 (normal range).
In January 2012 she had a stem cell transplant. By August she was feeling sick again. By November 2012 she was told that she had relapsed and that her light chains were at 46 (out of normal range). She got about 5 months out of the SCT before the pain returned.
With the relapse, Mom immediately went on to 25mgs of Revlimid as well as Dex, and it made her extremely ill. She is on a reduced dosage now (15 mgs), and is in her second month of treatment. Her light chains are back at 16, but she is still fairly ill, and very tired all the time.
She was told today that her Myeloma is a "bad one" and that the Revlimid could work for 15-18 months before becoming ineffective. She was told that she would never come off of the Revlimid while it is working, and that the dosage could not be lessened, or stopped altogether.
She was told that there were clinician trials available to her when the Revlimid no longer works.
We are all quite exhausted. I have been to every appointment that Mom has ever attended, and I took time off work and moved her into my house to care for her during the stem cell transplant. We have all invested a lot of passion into her treatment. As of today, I think we are all a little lost. Please talk to us, and share your thoughts regarding any of the above. From where we are standing, the horizon is unclear. Thanks in advance. Nice to meet you all. Dan.
Forums
Thoughts and comments please.
Last edited by Danilko on Fri Jan 04, 2013 12:02 pm, edited 1 time in total.
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Danilko - Name: Dan
- Who do you know with myeloma?: My Mom
- When were you/they diagnosed?: 2011
- Age at diagnosis: 66
Re: Thoughts and comments please.
Hi Dan. Firstly, sorry to hear about your mom's health and the great strain it puts on everyone close to her as you do your best to make her well.
I have written a small blog on this site called Conventional Treatment vs Intergrative Oncology, which basically combines the best of both worlds.
Most people with cancer, including those with multiple myeloma are faced with two treatment options: conventional treatment ie: chemo, radiation, surgery, stem cell transplants, etc OR integrative options which can include whole body or local hypothermia, supplements including zinc, selenium, vitimen B & C infusions, ozone infusions, magnetic field therapy and more, sometimes in combination with chemo.
I am bias because I believe when people take healing into there own hands and see what is 'outside the (conventional) box you will find doctors that really understand how cancer works and works with the patient to get well. I am in Germany at one of the cliniks. The hospital is occupied by people only with cancer and they come from everywhere because they have heard so much about the doctor and the clinic in his name.
It's a shame I could promote any drug name under the sun, but not reveal the place I have been treated, for fear of 'promotion', but I too was stage III, in pain. Now I am close to smoldering and feeling very well. I will be returning in April.
Good luck. Remember that many doctors will convince your mom to do things their way (If I listened to my Oncologist in Perth I would have had radiation, a vertaplasty surgery and a SCT plus a raft of drugs I simply did not need). Instead I did my own research and went about my treatment in an informed way. Each to their own, this is just what I did.
Take care, Dave
I have written a small blog on this site called Conventional Treatment vs Intergrative Oncology, which basically combines the best of both worlds.
Most people with cancer, including those with multiple myeloma are faced with two treatment options: conventional treatment ie: chemo, radiation, surgery, stem cell transplants, etc OR integrative options which can include whole body or local hypothermia, supplements including zinc, selenium, vitimen B & C infusions, ozone infusions, magnetic field therapy and more, sometimes in combination with chemo.
I am bias because I believe when people take healing into there own hands and see what is 'outside the (conventional) box you will find doctors that really understand how cancer works and works with the patient to get well. I am in Germany at one of the cliniks. The hospital is occupied by people only with cancer and they come from everywhere because they have heard so much about the doctor and the clinic in his name.
It's a shame I could promote any drug name under the sun, but not reveal the place I have been treated, for fear of 'promotion', but I too was stage III, in pain. Now I am close to smoldering and feeling very well. I will be returning in April.
Good luck. Remember that many doctors will convince your mom to do things their way (If I listened to my Oncologist in Perth I would have had radiation, a vertaplasty surgery and a SCT plus a raft of drugs I simply did not need). Instead I did my own research and went about my treatment in an informed way. Each to their own, this is just what I did.
Take care, Dave
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Dave - Name: Dave
- When were you/they diagnosed?: September 2012
- Age at diagnosis: 38
Re: Thoughts and comments please.
Daniko,
I'm sorry to hear about your mom. She has had a rough time.
You don't provide much information on where she lives or where she is being treated. My first thought is to take her to a treatement center that specializes in myeloma and/or to get a second opinion. This may uncover more options than your current doctor is aware of.
Best of luck,
Lyn
I'm sorry to hear about your mom. She has had a rough time.
You don't provide much information on where she lives or where she is being treated. My first thought is to take her to a treatement center that specializes in myeloma and/or to get a second opinion. This may uncover more options than your current doctor is aware of.
Best of luck,
Lyn
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Christa's Mom - Name: Christa's Mom
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: September, 2010
- Age at diagnosis: 53
Re: Thoughts and comments please.
Christa's Mom wrote:
> Daniko,
>
> I'm sorry to hear about your mom. She has had a rough time.
>
> You don't provide much information on where she lives or where she is being
> treated. My first thought is to take her to a treatement center that
> specializes in myeloma and/or to get a second opinion. This may uncover
> more options than your current doctor is aware of.
>
> Best of luck,
>
> Lyn
We are in Canada, and she has been treated by two specialists in multiple myeloma. She is getting the best treatment available to her, without stepping outside of our government system.
> Daniko,
>
> I'm sorry to hear about your mom. She has had a rough time.
>
> You don't provide much information on where she lives or where she is being
> treated. My first thought is to take her to a treatement center that
> specializes in myeloma and/or to get a second opinion. This may uncover
> more options than your current doctor is aware of.
>
> Best of luck,
>
> Lyn
We are in Canada, and she has been treated by two specialists in multiple myeloma. She is getting the best treatment available to her, without stepping outside of our government system.
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Danilko - Name: Dan
- Who do you know with myeloma?: My Mom
- When were you/they diagnosed?: 2011
- Age at diagnosis: 66
Re: Thoughts and comments please.
Hi Dan, i am in Calgary, and have received good care at our cancer centre here. We also have myeloma specialists here. I hear you when you mention the drugs that your Mom has had. They worked really well for me (I also had an autogenic stem cell transplant) but of course I realize that others may need more treatments than what I had. If you want the latest drugs, that are not yet approved here by Health Canada, I think that clinical trials are the way to go. When you say that your Mom has a 'bad' type of myeloma, is that referring to her cytogenetic profile?
If you keep reading the Beacon, you can type any number of topics into the 'search all forums' box above here. That way, you can get an international perspective on the latest news and research. I have learned so much from reading actually...it has been a real boon to my understanding of the field of myeloma. I hope that your mother does really well...please keep us posted.
If you keep reading the Beacon, you can type any number of topics into the 'search all forums' box above here. That way, you can get an international perspective on the latest news and research. I have learned so much from reading actually...it has been a real boon to my understanding of the field of myeloma. I hope that your mother does really well...please keep us posted.
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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: Thoughts and comments please.
Thanks for the comments. I, quite frankly, am not sure what I was expecting or hoping to hear, but any comments, thoughts or opinions are appreciated. I think that we just hit the mental wall, and after yesterday's appointment, we all sensed that the future lacked promise. We, of course, hope and pray that there are some success stories to come for Mom. She is 67 now (I'm 47), and she is determined to make it to 82. I would give anything to see that for her.
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Danilko - Name: Dan
- Who do you know with myeloma?: My Mom
- When were you/they diagnosed?: 2011
- Age at diagnosis: 66
Re: Thoughts and comments please.
If you read through this forum, there sure seems to be a lot of promise for new novel drug therapies that would be available to your mom via clinical trials once she becomes refractory to her current treatment. Just getting into this awful mess myself, I personally take solace in how many new treatments are available to those that relapse or become refractory, as I expect I will take advantage of those new novel treatments at some point in the future.
All the best to you and your mom.
All the best to you and your mom.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Thoughts and comments please.
Dan,
I am so sorry to hear of your mother's illness and the emotional toll that it is taking on all of you. My husband is 48 and was diagnosed in 2010 although we feel that he had it in at the very least 2007. He has been on Rev/Dex, had a SCT and relapsed after 18 months. When he was put back on the Rev/Dex all you know what cut loose. He is a diabetic, too, and the Dex sent his blood sugars into the 500-600 range. He felt horrible most of the time. His hemotoligst/oncologist took him off of the Dex. His blood sugar went down and he feels better (no t good). We saw his doc yesterday and she is happy with his kappa/lamda ratio. She was telling us of a new therapy that should be on the market in the next 3 months as well as other therapies coming down the pipe.
I feel very optimistic about the treatments that are currently available and with what is coming. I think that we have quite a few options. Hang in there.
Praying for a cure,
Marie
I am so sorry to hear of your mother's illness and the emotional toll that it is taking on all of you. My husband is 48 and was diagnosed in 2010 although we feel that he had it in at the very least 2007. He has been on Rev/Dex, had a SCT and relapsed after 18 months. When he was put back on the Rev/Dex all you know what cut loose. He is a diabetic, too, and the Dex sent his blood sugars into the 500-600 range. He felt horrible most of the time. His hemotoligst/oncologist took him off of the Dex. His blood sugar went down and he feels better (no t good). We saw his doc yesterday and she is happy with his kappa/lamda ratio. She was telling us of a new therapy that should be on the market in the next 3 months as well as other therapies coming down the pipe.
I feel very optimistic about the treatments that are currently available and with what is coming. I think that we have quite a few options. Hang in there.
Praying for a cure,
Marie
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Marie1964
Re: Thoughts and comments please.
Hi Dan, You got me to wondering what clinical trials might be available in a given area. I found that there is a link through the Leukemia Lymphona Society (LLS). If you go into the clinical trials area on their website, and answer a few questions, then type in your postal code (or zip code for the US), a list will appear that orders the trials by closest distance to you. I just put in 'myeloma' on their website (since they cover all blood cancers), put 'relapsed'
, and then did not specify what drug to use, and did not eliminate phase 1 trials. Quite a long list appeared, and a few were nearby. Thus, one could read up on the various trials, with the help of the Beacon and other websites too. Hope that helps!
, and then did not specify what drug to use, and did not eliminate phase 1 trials. Quite a long list appeared, and a few were nearby. Thus, one could read up on the various trials, with the help of the Beacon and other websites too. Hope that helps!
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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: Thoughts and comments please.
Hi Dan,
The most comprehensive source of clinical trial information relevant to the U.S. (and, for that matter, many other countries) is http://www.clinicaltrials.gov.
Not only is it comprehensive, but you do not need to worry about any data you enter being captured and used for reasons that you may find objectionable from a privacy standpoint. Also, no registration is necessary.
You can search by location (either country/state/province, or just country) by going to the "advanced search" page and filling it out with whatever conditions you wish. Here is a link to the advanced search page:
http://clinicaltrials.gov/ct2/search/advanced
and here is a link to a search for myeloma-related clinical trials with locations in Alberta (the province where our columnist, Nancy Shamanna, is from):
http://1.usa.gov/106eiSx
Best of luck to you and your mother,
Myeloma Beacon Staff
The most comprehensive source of clinical trial information relevant to the U.S. (and, for that matter, many other countries) is http://www.clinicaltrials.gov.
Not only is it comprehensive, but you do not need to worry about any data you enter being captured and used for reasons that you may find objectionable from a privacy standpoint. Also, no registration is necessary.
You can search by location (either country/state/province, or just country) by going to the "advanced search" page and filling it out with whatever conditions you wish. Here is a link to the advanced search page:
http://clinicaltrials.gov/ct2/search/advanced
and here is a link to a search for myeloma-related clinical trials with locations in Alberta (the province where our columnist, Nancy Shamanna, is from):
http://1.usa.gov/106eiSx
Best of luck to you and your mother,
Myeloma Beacon Staff
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