Hello,
My first time here on the Myeloma Beacon. Have been reading posts since I was diagnosed in January 2014. My oncologist is very well know in my area, and I am happy to be going to him. My wife had lung cancer and a brain tumor about 7 years ago, which he also treated. She is doing fine. My multiple myeloma was found after I broke several ribs putting large boxes away in the attic. I got wedged between some rafters after slipping.
Blood tests were done and then my diagnosis came back with stage 3 multiple myeloma. I have been very positive about everything and will continue to do so. Currently on Revlimid 25Mg 21 days on with 7 days off. 40mg dexamethasone every Thursday and daily 325 Mg aspirin.
My protein level is now at 6.50. I still need to get my first lab result copy but my doctor told me that it was at around 9 when first diagnosed. Two months of treatment and my oncologist is very happy with my results so far. He wants to do a bone infusion but I have to get some dental work done before that can happen. I go back to work in June.
So here is my question. My oncologist asked me last week to figure out where I would like to go for a future bone marrow transplant. I do not live anywhere close to a transplant hospital. The closest would be the City Of Hope in Los Angeles. That's about 4 hours away if traffic is ok. My oncologist said that he thought USC had some great facilities for multiple myeloma and transplants. Also, going north from where I live is Stanford and the University of California - San Francisco. Either way I need to think about the whole process.
I have been looking at the US News top-rated hospitals. It covers metro areas and all of the USA with a ranking. I feel that I would like to go to The City Of Hope because my wife went there for a second opinion and they were extremely helpful and very easy to work with. They also worked with our oncologist with a treatment plan. They are ranked number 15 nationally for cancer treatment.
Anyone who could give me some insight on any experience with their transplant hospitals in the Los Angeles area and also the northern California area would be greatly appreciated.
God bless you, George
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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: Thoughts on stem cell transplant centers in California?
Hi, George:
I can't tell you about any transplant centers BUT the City of Hope. They treated me like a queen there. My own autologous transplant was in-patient; no commuting. Mind you, I live about two hours away (when the traffic is good ... I try very hard not to have to drive during 'rush hour' there).
I didn't have a choice in transplant centers, since I have Kaiser Permanente and that's who they have the contract with. However, I'm happy with them, and when I have to go to Medicare this August, I'm sticking with Kaiser ... so that means I'm sticking with City of Hope.
They are going to have a bone marrow transplant reunion next week. I'm not going because my daughter is graduating from college (again) and I'd rather be there.
However, if it means anything, there are going to be a LOT of bone marrow transplant 'alumni' there, celebrating their recoveries.
I can't tell you about any transplant centers BUT the City of Hope. They treated me like a queen there. My own autologous transplant was in-patient; no commuting. Mind you, I live about two hours away (when the traffic is good ... I try very hard not to have to drive during 'rush hour' there).
I didn't have a choice in transplant centers, since I have Kaiser Permanente and that's who they have the contract with. However, I'm happy with them, and when I have to go to Medicare this August, I'm sticking with Kaiser ... so that means I'm sticking with City of Hope.
They are going to have a bone marrow transplant reunion next week. I'm not going because my daughter is graduating from college (again) and I'd rather be there.
However, if it means anything, there are going to be a LOT of bone marrow transplant 'alumni' there, celebrating their recoveries.-
dianaiad - Who do you know with myeloma?: Me
- When were you/they diagnosed?: Officially...March 2013
- Age at diagnosis: 63
Re: Thoughts on stem cell transplant centers in California?
Thank you so much for the reply. My wife also was treated extremely well, from being escorted through the front entrance and on to the specialist, we never once felt lost in such a large hospital. The grounds were also very nice. I feel that everything good helps mentally when we are in this situation. That includes the gardens and surroundings that I remember at City Of Hope.
I have one more month off from work and my oncologist wants me to take advantage of that time to visit a hospital of my choice for the transplant. He said that if I didn't feel comfortable at one, he would refer me to another. Of course, insurance will play into that. I am lucky enough to have purchased an Aflac cancer policy about 10 years ago. That also helps.
I hope that you are doing well and it continues to be a positive outcome for you. Your comments on your experience there a City Of Hope a very helpful. I also feel blessed to have The Myeloma Beacon.
Thank you again,
George
I have one more month off from work and my oncologist wants me to take advantage of that time to visit a hospital of my choice for the transplant. He said that if I didn't feel comfortable at one, he would refer me to another. Of course, insurance will play into that. I am lucky enough to have purchased an Aflac cancer policy about 10 years ago. That also helps.
I hope that you are doing well and it continues to be a positive outcome for you. Your comments on your experience there a City Of Hope a very helpful. I also feel blessed to have The Myeloma Beacon.
Thank you again,
George
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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: Thoughts on stem cell transplant centers in California?
George,
Like Dianaid, I am a Kaiser patient as well and had my stem cell transplant done at City of Hope and would go back there again without any reservations. They have a whole floor that has special rooms for the SCT patients that have filtered outside air for each room and individual climate control. The food looked pretty good if you can eat it, and they have actives for the patients if you have the energy.
I know if you are a Kaiser patient in northern California and need a SCT they send you to either Stanford or UC San Francisco. I also know that UC San Diego dose transplant as well. As far as I know these are all good centers.
One thing to consider is City of Hope does a lot of SCT and they have invested a lot in the hospital infrastructure to support them. The have a facility to freeze and store extra stem cells from harvesting so they can be used for future transplants, if necessary. Kaiser keeps my extra stem cell there indefinitely. Not all transplant centers will store extra stem cells. Also, not all insurance companies will cover the cost of storing extra stem cells.
Like Dianaid, I am a Kaiser patient as well and had my stem cell transplant done at City of Hope and would go back there again without any reservations. They have a whole floor that has special rooms for the SCT patients that have filtered outside air for each room and individual climate control. The food looked pretty good if you can eat it, and they have actives for the patients if you have the energy.
I know if you are a Kaiser patient in northern California and need a SCT they send you to either Stanford or UC San Francisco. I also know that UC San Diego dose transplant as well. As far as I know these are all good centers.
One thing to consider is City of Hope does a lot of SCT and they have invested a lot in the hospital infrastructure to support them. The have a facility to freeze and store extra stem cells from harvesting so they can be used for future transplants, if necessary. Kaiser keeps my extra stem cell there indefinitely. Not all transplant centers will store extra stem cells. Also, not all insurance companies will cover the cost of storing extra stem cells.
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Eric Hofacket - Name: Eric H
- When were you/they diagnosed?: 01 April 2011
- Age at diagnosis: 44
Re: Thoughts on stem cell transplant centers in California?
Eric,
Thank you for all the information and insight on the facility. This is of great help for me. For some reason, I felt at ease when my wife went there for her lung cancer treatment plan. They worked with our oncologist to come up with a second opinion chemo treatment. Like you said, insurance will most likely play into it. I am on my wife's insurance due to my last open enrollment at work proved to be a shocker. Premiums were going to triple and coverage was way less. Her insurance so far has been great. Hope it continues that way.
I have read some discussions that say they had to be close to the hospital after discharge so they could have blood work and also check ups during the week. Some three times per week. Not sure if this is true for everyone or if it just depends on your health when discharged. No friends or relatives down there, so I am not sure how I would deal with that part.
I am sure they will fill me in on everything when I go for my initial visit. I will be going back to work in June, so my oncologist wants me to get as much done while I am still home. He initially said that I will need to decide where to go for the transplant. He also thought that USC would be a good choice. My daughter had a neighbor that could have been referred to either USC or UCLA for his transplant, but he decided to go to COH.
I hope that all is going well for you.
Thank you,George
Thank you for all the information and insight on the facility. This is of great help for me. For some reason, I felt at ease when my wife went there for her lung cancer treatment plan. They worked with our oncologist to come up with a second opinion chemo treatment. Like you said, insurance will most likely play into it. I am on my wife's insurance due to my last open enrollment at work proved to be a shocker. Premiums were going to triple and coverage was way less. Her insurance so far has been great. Hope it continues that way.
I have read some discussions that say they had to be close to the hospital after discharge so they could have blood work and also check ups during the week. Some three times per week. Not sure if this is true for everyone or if it just depends on your health when discharged. No friends or relatives down there, so I am not sure how I would deal with that part.
I am sure they will fill me in on everything when I go for my initial visit. I will be going back to work in June, so my oncologist wants me to get as much done while I am still home. He initially said that I will need to decide where to go for the transplant. He also thought that USC would be a good choice. My daughter had a neighbor that could have been referred to either USC or UCLA for his transplant, but he decided to go to COH.
I hope that all is going well for you.
Thank you,George
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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: Thoughts on stem cell transplant centers in California?
You make a good point about what happens after you are discharged from the hospital after SCT.
In my case, Kaiser has about a half dozen doctors assigned to do SCT in southern California who spend about half their time at Kaiser Sunset in LA and the rest of their time at City of Hope. I was assigned to one of these doctors and they managed my care at City of Hope. After I was discharged I continued to see that doctor for a few months afterward for follow up appointments.
Eventually I was transferred, if you could call it that, back to the local oncologist. I needed to do labs post SCT but, since I was in the Kaiser system, I could get those labs done at any Kaiser lab facility -- including the one 15 minutes from where I live. I did not have to go back to City of Hope or LA to for those labs.
You probably need to discuss with you oncologist how and what the plan is for who would be responsible for what during and after your SCT. I can see that might vary depending on where you have the SCT done. If I had to do lots of follow up at the SCT facility itself, that would be big consideration in my choice -- the closer the better.
In my case, Kaiser has about a half dozen doctors assigned to do SCT in southern California who spend about half their time at Kaiser Sunset in LA and the rest of their time at City of Hope. I was assigned to one of these doctors and they managed my care at City of Hope. After I was discharged I continued to see that doctor for a few months afterward for follow up appointments.
Eventually I was transferred, if you could call it that, back to the local oncologist. I needed to do labs post SCT but, since I was in the Kaiser system, I could get those labs done at any Kaiser lab facility -- including the one 15 minutes from where I live. I did not have to go back to City of Hope or LA to for those labs.
You probably need to discuss with you oncologist how and what the plan is for who would be responsible for what during and after your SCT. I can see that might vary depending on where you have the SCT done. If I had to do lots of follow up at the SCT facility itself, that would be big consideration in my choice -- the closer the better.
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Eric Hofacket - Name: Eric H
- When were you/they diagnosed?: 01 April 2011
- Age at diagnosis: 44
Re: Thoughts on stem cell transplant centers in California?
Eric,
Thanks again for that information.
I usually have at least two office visits per month with my oncologist for my lab results. At that time, I usually have many more questions for him. So I will include some of the things that you have brought up for him. First will be my initial visit with a transplant hospital. So I will have many questions about living far from the hospital for them. Also all the insurance details. Good thing my wife works at a local hospital emergency room. She can help with some of it.
I read that COH has some cottages that patients can stay at after their transplant. But i believe that they are for folks who are from out of state. Also one of my co-workers had cancer (not multiple myeloma) several years back, and he was able to keep a motor home or travel trailer at the hospital where he was treated if he wanted to. I believe that there was an RV rental company that would do all the setup. Not sure if that's possible at COH.
Thank You
Thanks again for that information.
I usually have at least two office visits per month with my oncologist for my lab results. At that time, I usually have many more questions for him. So I will include some of the things that you have brought up for him. First will be my initial visit with a transplant hospital. So I will have many questions about living far from the hospital for them. Also all the insurance details. Good thing my wife works at a local hospital emergency room. She can help with some of it.
I read that COH has some cottages that patients can stay at after their transplant. But i believe that they are for folks who are from out of state. Also one of my co-workers had cancer (not multiple myeloma) several years back, and he was able to keep a motor home or travel trailer at the hospital where he was treated if he wanted to. I believe that there was an RV rental company that would do all the setup. Not sure if that's possible at COH.
Thank You
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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: Thoughts on stem cell transplant centers in California?
dianaiad wrote:
My dad has been diagnosed with multiple myeloma and he has Kaiser insurance next year. I was wondering which Kaiser do you go to and who is your doctor?
I didn't have a choice in transplant centers, since I have Kaiser Permanente and that's who they have the contract with. However, I'm happy with them, and when I have to go to Medicare this August, I'm sticking with Kaiser ... so that means I'm sticking with City of Hope.
My dad has been diagnosed with multiple myeloma and he has Kaiser insurance next year. I was wondering which Kaiser do you go to and who is your doctor?
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Wilmer562
8 posts
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