[GFNY1966]

Newly diagnosed and confused

by GFNY1966 on Fri Nov 07, 2014 7:11 am

Hello,

About 6 weeks ago I rushed to Sutter Health hospital in San Francisco after learning that my kidneys were failing for some unknown reason. I spent the next four days there while they tried to figure out what was happening to my kidneys, which were operating at about 10%.

They ran all kinds of blood tests, MRI’s, etc., and did a kidney biopsy (and received partial results within a few days), but couldn’t figure out what was going on after almost 5 weeks. All the while I've been on prednisone, which has improved my kidney function but now that has plateaued.

One reason for the delay was the biopsy results in that Sutter Health had a competitive relationship with the UCSF so they had to send my test out of state to Washington University.

But I finally learned two days ago that I have Stage 2 multiple myeloma from my new oncologists / hematologists at Sutter Health. This brings me to my question.

I am thinking that I should consider getting a second opinion and possibly switching to USCF for the following reasons:

1. Through research they appear to be an academic university and more renowned in the field than Sutter Health
2. They do stem cell transplants and Sutter Health does not, so I will eventually need to go to UCSF anyway. I’m 48 year old and pretty healthy otherwise. My onc has told me that I should plan on a transplant. It seems to make sense to get all treatment at one place.
3. I am concerned that Sutter first told me it wasn’t cancer, and then took almost 5 weeks to figure out that it was. My confidence in them is a bit shaken.

But I had my bone marrow biopsy today with the Sutter Health oncologist (who I like very much by the way) today. She told me that she will most likely start chemo with next week … before I have a second opinion appointment with the oncologist at UCSF. Am I doing this the right way? How do I know which one to go with? So overwhelming.

Thanks to everyone for reading!

[Multibilly]

Re: Newly diagnosed and confused

by Multibilly on Fri Nov 07, 2014 9:20 am

Edward,

I personally think that getting a second opinion is always a great idea, and UCSF has some great multiple myeloma specialists with which to consult. You could always just postpone starting your chemo for a few days while you wait to get a second opinion and better educate yourself.

Also note that getting a transplant is not one's only option for treatment either. Many multiple myeloma patients choose not to go the transplant route and instead rely solely on chemo.

Which chemo regimen is Sutter thinking about starting you on?

[GFNY1966]

Re: Newly diagnosed and confused

by GFNY1966 on Fri Nov 07, 2014 12:16 pm

Hi Multibilly,

Thanks so much for the reply. I should know the answer to which meds they're considering but I can't remember. She told me in the initial meeting on Tuesday but I was in shock at the news so don't remember.

I do her telling me that it would be a combination of three drugs that would be given to me intravenously and in pill form once a week to begin with. She said that she would also recommend a stem cell transplant. She said she would recommend this for any multiple myeloma patient who qualifies as it's the best way to totally knock it out. And since my Kidneys are still recovering I'm not eligible for any trials. Why would anyone not want a transplant? Seems like the best way to extend a healthy life.

And thanks for your thoughts on the second opinion. Think I'm going to follow your advice exactly.

Best,
Edward

[Multibilly]

Re: Newly diagnosed and confused

by Multibilly on Fri Nov 07, 2014 12:46 pm

Hi Edward,

I remember being where you were a couple of years ago when I was first diagnosed with smoldering multiple myeloma. Based on a discussion with my fist specialist (who worked at a transplant center), I thought my only choice was to proceed with a transplant, should I become symptomatic.

Here's a few pieces of advice to consider, in no particular order.

1. When you go to your appointments, bring a recording device or smartphone to record the appointment. It's very easy to get overwhelmed ("shocked"), especially during these initial appoint­ments and forget half of what you heard. Also, write down all your questions before­hand and check them off as you go through your appointment. It's easy to forget to ask key questions if the doc throws you a curve ball during the appointment.

2. Before rushing into treatment, take the time to understand all your options and which drugs you are signing up for. There are many choices available to you.

3. Find out if your doctor is truly a multiple myeloma specialist. Does that person focus his / her practice on multiple myeloma patients and does he/she publish papers in the field of multiple myeloma or speak at various multiple myeloma forums? Does that doctor participate in multiple myeloma clinical trials?

4. Get a second opinion.

5. Take a deep breath and have some serious discussions about the pros and cons of trans­plants. It's not that simple of a choice, although some doctors will automatically suggest trans­plants that as their default choice for nearly all patients. Specialists span the entire continuum when it comes to the subject of transplants, ranging from always suggesting transplants, to never suggesting transplants, to only suggesting transplants under certain circumstances.

6. To begin to understand the debate on whether to transplant or not (or to delay), you might find this thread to be a good starting point. Be clear that I'm not advocating one approach over another. That is a deeply personal decision that only you can make. Note that there are a couple of clinical trials that are going on right now to help better answer these questions with more solid data.

https://myelomabeacon.org/forum/looking-for-feedback-on-recommended-first-round-treatment-t1502.html

Hope this helps.

[Multibilly]

Re: Newly diagnosed and confused

by Multibilly on Fri Nov 07, 2014 12:52 pm

You might also find this debate to be insightful:

"Ken Anderson & Sergio Giralt debate about early vs. late stem cell transplants", Beacon forum thread started Oct 8, 2014.

[GFNY1966]

Re: Newly diagnosed and confused

by GFNY1966 on Fri Nov 07, 2014 2:39 pm

Multibilly,

All I can say is "wow". I can't tell you how much I appreciate the time and care you took to write such an thoughtful response. I am touched. As much as others are trying to give comfort, I now realize why boards like this exist. I'll make sure to do this for others when I'm in a place where I can help.

Your advice really hits home and makes a lot of sense. I'll read though the links you sent to better understand my choices, but my ONC made it seem so basic saying ... "I always recommend SCT's for young people like you. It's the best way to knock it out ..." I don't feel so young at 48, but I guess that's the case for multiple myeloma.

Also, when you write the below, what is the best way to find out about a doctor's credentials etc?

"Find out if your doctor is truly a multiple myeloma specialist. Does that person focus his/her practice on multiple myeloma patients and does he/she publish papers in the field of multiple myeloma or speak at various multiple myeloma forums? Does that doctor participate in multiple myeloma clinical trials?"

Thanks again

[Multibilly]

Re: Newly diagnosed and confused

by Multibilly on Fri Nov 07, 2014 3:17 pm

Well, finding a specialist isn't an exact science.

1. You can ask folks on this forum for doctor recommendations at a particular center or in a particular city. That might be your best bet.

2. You can also find a list of some centers at this link:

https://myelomabeacon.org/resources/treatment-centers/#California

(It sounds like you are in northern California. But if you want to talk to somebody at the non-transplant end of the treatment spectrum, you could also reach out to the IMBCR in West Hollywood).

3. In the case of UCSF, they definitely have a few multiple myeloma specialists there such as Dr. Martin and Dr. Wolf.

4. If you find a particular doctor you are considering, you can just google their name and include a qualifier like "ncbi myeloma" for looking for articles. For example, for Dr. Rajkumar at the Mayo, you could google "Rajkumar ncbi meyloma". Or for participation in major conferences such as ASH (American Society of Hematologists), you could google "Rajkumar ASH 2014 meyloma"

[Blee]

Re: Newly diagnosed and confused

by Blee on Fri Nov 07, 2014 8:43 pm

In addition to Multibilly's advice, I wanted to let you know that there is a SF Myeloma support group, http://www.sfbayareamyelomasupport.org/

The next meeting is Sat, Nov 15, in South SF, where you can meet fellow multiple myeloma and ask questions. Also, Dr. Martin from UCSF will be giving a presentation.

I feel for you, as I remember how scary and confusing it all was for me at the beginning.

Hope to see you there.

[GFNY1966]

Re: Newly diagnosed and confused

by GFNY1966 on Sat Nov 08, 2014 3:28 am

Thanks again, Multibilly. Your guidance has been invaluable. Here I am less than 4 days after being diagnosed and I'm starting to feel hope. I'm going to follow your guidance and let this journey begin.

All the best to you and continued good health.

Edward

[GFNY1966]

Re: Newly diagnosed and confused

by GFNY1966 on Sat Nov 08, 2014 3:30 am

Blee,

Thanks so much for letting me know about the meeting in South SF next Saturday! I will be there.

Edward