Hi MoutainGuy,
No, you did not misunderstand the statement regarding UCSF. That statement was made by the nurse practitioner during my "Chemo Teach" session in response to my commenting that I wished to see the myeloma specialist before proceeding with the treatment strategy being proposed by my hematologist/oncologist.
She appeared to be grasping at straws when she produced that answer. I then asked why my doctor had chosen the CyBorD regimen, and again she had no direct answer and agreed to have someone call me after reviewing the doc's notes.
I was latter contacted by an assistant who explained that Revlimid was "more difficult to come by" than Cytoxan because it is a "controlled substance with more stringent restrictions than morphine". ???
This statement only added to my mounting distrust. He went on to explain that the doctor also felt CyBorD was more tolerable and effective, with considerably less side effects in treating my specific condition.
I feel that trust is of the utmost importance in the treatment of this or any other life threatening disease. Needless to say, this encounter did nothing to bolster my confidence in my decision to go forward with treatment. Nevertheless I find the idea of a rapid and painful demise not to be a an option!
Perhaps I need to contact UCSF directly and get the facts with regard to seeing the specialist.
Thanks for the wake up call.
Gruncle
Forums
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Gruncle - Name: Doug
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: Mar.14, 2014
- Age at diagnosis: 64
Re: Newly diagnosed 10 days ago - frightened and confused
First, I want to emphasize that getting treated is the #1 priority here.
But given the added info you just provided, I would personally consider switching facilities. Please note that there are plenty of other centers of excellence for multiple myeloma and specialists that you can find in the bay area. I just can't imagine getting all this information second hand from a nurse as opposed to getting it directly from the one doctor that will seeing you through this entire journey. Folks on this site that are in the bay area may jump in to defend UCSF or might recommend some other facilities. No idea what your insurance situation is, but a couple of facilities with multiple myeloma expertise in the bay area are:
Stanford University:
http://cancer.stanfordhospital.com/cancerTypes/multipleMyeloma/default
Sutter Health/Alta Bates Berkeley/Oakland:
http://www.cancer.sutterhealth.org/information/index.html
To put things in perspective, I am smoldering and I spend a good 30-45 minutes with the specialist every time I see one....and I haven't received any treatment yet. I also am able to either email or talk to these specialists over the phone if I have questions between visits. Not to belittle my nurses in any way (they are great), but they simply take my vitals when I go in for an appointment and that's it. They don't act as "middle men" to the specialists.
Also, for UCSF to say that getting Revlimid is "more difficult to come by" is bizarre, to say the least. We're not talking about some out of the way facility on a remote island....we are talking about UCSF in San Francisco.
I'm also not a personal fan of Cytoxan, especially as a front line treatment, but many on this forum have done well by CyBorD. My point here is to simply do your research and to get a second opinion (in person from the specialist) before going down a given path.
Again, the last thing I want to do here is to sway you from considering treatment. I may also be reacting a bit too harshly to your comments about UCSF and you may simply be a victim of unique circumstances and the particular people you are dealing with on this particular go-around?
But given the added info you just provided, I would personally consider switching facilities. Please note that there are plenty of other centers of excellence for multiple myeloma and specialists that you can find in the bay area. I just can't imagine getting all this information second hand from a nurse as opposed to getting it directly from the one doctor that will seeing you through this entire journey. Folks on this site that are in the bay area may jump in to defend UCSF or might recommend some other facilities. No idea what your insurance situation is, but a couple of facilities with multiple myeloma expertise in the bay area are:
Stanford University:
http://cancer.stanfordhospital.com/cancerTypes/multipleMyeloma/default
Sutter Health/Alta Bates Berkeley/Oakland:
http://www.cancer.sutterhealth.org/information/index.html
To put things in perspective, I am smoldering and I spend a good 30-45 minutes with the specialist every time I see one....and I haven't received any treatment yet. I also am able to either email or talk to these specialists over the phone if I have questions between visits. Not to belittle my nurses in any way (they are great), but they simply take my vitals when I go in for an appointment and that's it. They don't act as "middle men" to the specialists.
Also, for UCSF to say that getting Revlimid is "more difficult to come by" is bizarre, to say the least. We're not talking about some out of the way facility on a remote island....we are talking about UCSF in San Francisco.
I'm also not a personal fan of Cytoxan, especially as a front line treatment, but many on this forum have done well by CyBorD. My point here is to simply do your research and to get a second opinion (in person from the specialist) before going down a given path.
Again, the last thing I want to do here is to sway you from considering treatment. I may also be reacting a bit too harshly to your comments about UCSF and you may simply be a victim of unique circumstances and the particular people you are dealing with on this particular go-around?
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Newly diagnosed 10 days ago - frightened and confused
"Also, for UCSF to say that getting Revlimid is "more difficult to come by" is bizarre, to say the least. We're not talking about some out of the way facility on a remote island....we are talking about UCSF in San Francisco."
Sorry if I was unclear in my post. It was my local cancer center hematologist/oncologist's liaison who provided the BS about "Revlimid is more difficult to come by" comment. I will definitely be mentioning that tid bit to my doctor!
I will follow through with my plan to contact UCSF directly. In the mean time I will also look into Stanford and Berkeley center for references.
Thanks for your support. I 'm still in the process of wrapping my head around all of this.
Doug
Sorry if I was unclear in my post. It was my local cancer center hematologist/oncologist's liaison who provided the BS about "Revlimid is more difficult to come by" comment. I will definitely be mentioning that tid bit to my doctor!
I will follow through with my plan to contact UCSF directly. In the mean time I will also look into Stanford and Berkeley center for references.
Thanks for your support. I 'm still in the process of wrapping my head around all of this.
Doug
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Gruncle - Name: Doug
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: Mar.14, 2014
- Age at diagnosis: 64
Re: Newly diagnosed 10 days ago - frightened and confused
Doug,
Stanford is also an excellent myeloma treatment center in the SF Bay Area. There may be others as well, but UCSF and Stanford are the two that I am aware of.
The statement about Revlimid is bizarre. It is a very expensive drug so maybe that is the real issue? Because it is believed that Revlimid is highly likely to cause serious birth defects, those taking it have to take a patient survey every month where they affirm that they are not donating blood or semen and are not having sex without a condom. I have to have my prescription renewed every month and I believe that is the case for everyone else taking Revlimid as well.
It is not “more controlled” than Class 2 pain killers and you do not have to do the same paperwork as you would for a FDA Class 2 prescription.
I think you need to find a doctor or nurse who knows that she is talking about. It sounds like she was speculating instead of saying "I do not know."
Stanford is also an excellent myeloma treatment center in the SF Bay Area. There may be others as well, but UCSF and Stanford are the two that I am aware of.
The statement about Revlimid is bizarre. It is a very expensive drug so maybe that is the real issue? Because it is believed that Revlimid is highly likely to cause serious birth defects, those taking it have to take a patient survey every month where they affirm that they are not donating blood or semen and are not having sex without a condom. I have to have my prescription renewed every month and I believe that is the case for everyone else taking Revlimid as well.
It is not “more controlled” than Class 2 pain killers and you do not have to do the same paperwork as you would for a FDA Class 2 prescription.
I think you need to find a doctor or nurse who knows that she is talking about. It sounds like she was speculating instead of saying "I do not know."
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Eric Hofacket - Name: Eric H
- When were you/they diagnosed?: 01 April 2011
- Age at diagnosis: 44
Re: Newly diagnosed 10 days ago - frightened and confused
Hi there,
I'm sure you are still in shock as I was finding out you have cancer. I had many rib fractures and lower back pain. It took two x rays of my ribs, a CT scan of my skull, and blood work for my GP to send me to a blood specialist , I thought. She never mentioned she thought I had cancer.
When I met with my specialist he told me I had multiple myeloma. A treatable but not curable cancer, and I had many bone lesions in my skull and throughout my body. Of course my ribs where broken. My calcium was very high.
Luckily we were tape recording the meeting because I did not really remember anything that was said except I would die in a couple of months if I did not take treatment. This was Tuesday and on Thursday I was getting my first Velcade shot . He then did a bone marrow test. Yuck , I never want to do that again. Very painful. Brace your self if you haven't done it yet. I was then put on dexamethasone steroids.
The treatment worked in about three months. I would recommend starting treatment as soon as possible. Don't let it get worse. I'm in total remission . Still taking the dex. Once a week and now getting medicine to make my bones stronger. We taped every doctor's appointment which really helps. Just turn your cell phone to record and the doctor will never know. You can listen to it later. That helped us so much.
I also joined a cancer support at Kaiser Morse right away. It's been a blessing. Anyone can come even if you are not a member.
I am sending prayers your way, and hope all goes well for you and your journey.
I'm sure you are still in shock as I was finding out you have cancer. I had many rib fractures and lower back pain. It took two x rays of my ribs, a CT scan of my skull, and blood work for my GP to send me to a blood specialist , I thought. She never mentioned she thought I had cancer.
When I met with my specialist he told me I had multiple myeloma. A treatable but not curable cancer, and I had many bone lesions in my skull and throughout my body. Of course my ribs where broken. My calcium was very high.
Luckily we were tape recording the meeting because I did not really remember anything that was said except I would die in a couple of months if I did not take treatment. This was Tuesday and on Thursday I was getting my first Velcade shot . He then did a bone marrow test. Yuck , I never want to do that again. Very painful. Brace your self if you haven't done it yet. I was then put on dexamethasone steroids.
The treatment worked in about three months. I would recommend starting treatment as soon as possible. Don't let it get worse. I'm in total remission . Still taking the dex. Once a week and now getting medicine to make my bones stronger. We taped every doctor's appointment which really helps. Just turn your cell phone to record and the doctor will never know. You can listen to it later. That helped us so much.
I also joined a cancer support at Kaiser Morse right away. It's been a blessing. Anyone can come even if you are not a member.
I am sending prayers your way, and hope all goes well for you and your journey.
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Patty9979
Re: Newly diagnosed 10 days ago - frightened and confused
Hi Patty9979,
Thanks for the kind words and prayers. I still have not started my treatment as I feel I need to have this PET scan done as a way to "reinforce" this original diagnosis. My specialist has said that it is OK to postpone but that having the results of this PET scan won't change the fact that I have 80% marrow involvement with mild anemia.
Other than a lack of energy I feel good which only makes it even more difficult to acknowledge the existence of this cancer. Denial really has a strong hold on me.
If all goes as planned I will have the scan done this week and start treatment by next week.
Thanks for the kind words and prayers. I still have not started my treatment as I feel I need to have this PET scan done as a way to "reinforce" this original diagnosis. My specialist has said that it is OK to postpone but that having the results of this PET scan won't change the fact that I have 80% marrow involvement with mild anemia.
Other than a lack of energy I feel good which only makes it even more difficult to acknowledge the existence of this cancer. Denial really has a strong hold on me.
If all goes as planned I will have the scan done this week and start treatment by next week.
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Gruncle - Name: Doug
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: Mar.14, 2014
- Age at diagnosis: 64
Re: Newly diagnosed 10 days ago - frightened and confused
It can be very overwhelming to hear this terrible news and I must say I was very shocked when I was diagnosed. I was always so healthy and only 38 years old so when I started getting nose bleeds, headaches and back pain I didn't really think much of it. It was only after a big hug from my husband which caused me a lot of pain that I went to see a doctor. That hug basically saved me, at this stage my kidneys had almost failed, I was severely anemic and the hug broke my rib.
The shock of the news did send me into a spin and it took me some time to even talk about it. So it's great that you have joined this fantastic beacon as it offers great support, hope, and a lot of great information.
I would definitely recommend treatment as there is so much great stuff out there now and a lot of it can be tolerated quite well. Starting on the meds at first can be hard, but give the body time to get used to them and you will find symptoms decrease. My kidneys have fully recovered and I did have a break off chemo for 2 1/2 years after a stem cell transplant, which was great. I've just started back on treatment and am doing well.
Best of luck with everything and my best advice would have to be to stay positive and to believe that things will be get better and, if you feel like crying, try to laugh instead. They do say laughter is the best medicine.
The shock of the news did send me into a spin and it took me some time to even talk about it. So it's great that you have joined this fantastic beacon as it offers great support, hope, and a lot of great information.
I would definitely recommend treatment as there is so much great stuff out there now and a lot of it can be tolerated quite well. Starting on the meds at first can be hard, but give the body time to get used to them and you will find symptoms decrease. My kidneys have fully recovered and I did have a break off chemo for 2 1/2 years after a stem cell transplant, which was great. I've just started back on treatment and am doing well.
Best of luck with everything and my best advice would have to be to stay positive and to believe that things will be get better and, if you feel like crying, try to laugh instead. They do say laughter is the best medicine.
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Sandy - Name: Sandy
- Who do you know with myeloma?: me
- When were you/they diagnosed?: diagnosed Nov 2010
- Age at diagnosis: 38
Re: Newly diagnosed 10 days ago - frightened and confused
Hello Gruncle,
I'm very sorry you have been diagnosed with multiple myeloma. This is a great group to learn from; I know I have. My husband was diagnosed nearly three years ago. Treatments are changing rapidly and even though it's not generally curable, it's described as treatable. That sounds really crappy when you initially hear that, but now, looking back at it, it really is an okay state to be in.
My husband was 59 when diagnosed with 83% marrow involvement and either 4.9 or 5.1 M-spike, depending on the two different BMB's and labs. He had severe anemia along with several skeletal lesions. His local oncologist / hematologist referred us to the University of Michigan, where we were lucky he got into a clinical trial for newly diagnosed multiple myeloma patients: carfilzomib [Kyprolis], Revlimid, and dexamethasone. After 24 months in the clinical trial, he's now in stringent complete remission and on maintenance Revlimid.
He has experienced most of the textbook complications that multiple myeloma patients have: fractures, infections, a blood clot, and the Revlimid and dex side effects, but he still continued to work unless he was getting infusions or was really sick from infections. His infusions never caused him any significant side effects. His employer (and mine) were very understanding when we needed to miss work due to his treatments.
He had his stem cells collected between cycles 4 and 5, and they're stored at U of M in case he ever needs a transplant. He decided he did not want to transplant until his other options had run out.
Best wishes as you go ahead with treatment -- I know my family and I are awfully glad my husband made that decision, too!
Chris M.
I'm very sorry you have been diagnosed with multiple myeloma. This is a great group to learn from; I know I have. My husband was diagnosed nearly three years ago. Treatments are changing rapidly and even though it's not generally curable, it's described as treatable. That sounds really crappy when you initially hear that, but now, looking back at it, it really is an okay state to be in.
My husband was 59 when diagnosed with 83% marrow involvement and either 4.9 or 5.1 M-spike, depending on the two different BMB's and labs. He had severe anemia along with several skeletal lesions. His local oncologist / hematologist referred us to the University of Michigan, where we were lucky he got into a clinical trial for newly diagnosed multiple myeloma patients: carfilzomib [Kyprolis], Revlimid, and dexamethasone. After 24 months in the clinical trial, he's now in stringent complete remission and on maintenance Revlimid.
He has experienced most of the textbook complications that multiple myeloma patients have: fractures, infections, a blood clot, and the Revlimid and dex side effects, but he still continued to work unless he was getting infusions or was really sick from infections. His infusions never caused him any significant side effects. His employer (and mine) were very understanding when we needed to miss work due to his treatments.
He had his stem cells collected between cycles 4 and 5, and they're stored at U of M in case he ever needs a transplant. He decided he did not want to transplant until his other options had run out.
Best wishes as you go ahead with treatment -- I know my family and I are awfully glad my husband made that decision, too!
Chris M.
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Chris M
Re: Newly diagnosed 10 days ago - frightened and confused
Hi Chris,
I am happy to report that I stared my treatment yesterday! CyBorD cocktail after PET scan revealed NO tumors or lesions (waited one month for darn insurance to auth this scan...ugh!) Even with 80% plasma marrow involvement and Igh, IgA and a few other abnormal readings, my doc downgraded me from Stage III to Stage II....something to celebrate!
I'll be seeing the "Myeloma Gurus" at University of Cal San Francisco next week for further counsel and collaboration.
Thanks for your encouragement and I pray your husband continues to do well.
Doug
I am happy to report that I stared my treatment yesterday! CyBorD cocktail after PET scan revealed NO tumors or lesions (waited one month for darn insurance to auth this scan...ugh!) Even with 80% plasma marrow involvement and Igh, IgA and a few other abnormal readings, my doc downgraded me from Stage III to Stage II....something to celebrate!
I'll be seeing the "Myeloma Gurus" at University of Cal San Francisco next week for further counsel and collaboration.
Thanks for your encouragement and I pray your husband continues to do well.
Doug
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Gruncle - Name: Doug
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: Mar.14, 2014
- Age at diagnosis: 64
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