Namaste All & Blessings from Nashville, TN.
My life partner was diagnosed with multiple myeloma on January 7, 2015. Happy New Year ... NOT! We are grateful to have supportive family, friends and spiritual communities - and we are widening that circle to include you out there in Multiple Myeloma Land. It's been a crazy ride!
A few days after diagnosis - approximately January 12th - we were told she was in acute renal failure and was hospitalized immediately. Began dialysis at the hospital too - 3x week for 4 hours at a time.
January 18, 2015 she began her healing cocktail of: Velcade 2 mg, dex 4 mg, Cytoxan 50 mg. She was stable and doing well - released from the hospital January 29 - outpatient dialysis continue on 3x a week schedule. Her nephrologist has said her kidneys are moving in the right direction and can recover in the next 2-3 months.
Chemo cocktail was interrupted February 2, 2015 when she was hospitalized due to pancreatitis and extreme mental confusion. Inability to comprehend, didn't know her name, birthday, etc. Followed by inability to respond at all. (For 12 hours all she could say was "um", "hum", "yea", and occasionally sing a few words to verses of favorite song).
She was seen by a neurologist. NO she did not fall at home. Hospital did CAT scan, MRI, x-rays, EEG, spinal tap -aka- lumbar puncture. NO myeloma in spinal fluid or brain. After 4 days off of all chemo and other drugs, her mental fog lifted by 70% on February 6. Then the pancreatitis subsided and she was sent back home February 10.
The mental fog returned February 15, less dramatically, but she couldn't say her ABC's. She's back to 70%: Knows who she is and what's happening around her, but thoughts are not ordered, speech is slow. She's not entirely back on track.
Doctors and I suspect brain shut due to toxicity overload from chemo / drugs.
She and I are two of those healthy people doing all the "right things" together for 18+ years. We both eat organic, do yoga - hot yoga even! We have an affirmative spiritual - not religious - practice whose cornerstones are prayer and meditation. We buy non toxic cleaners, laundry detergent, soap, toothpaste ... you get the idea. We take walks with our dogs, laugh daily and enjoy life overall. So this diagnosis was completely out of the blue.
Then, as I was sobbing in the arms of a compassionate staffer at Whole Foods who said ... chemo and radiation ... A light bulb went off.
My sweetie was living in Japan when the 2011 earthquake / tsunami triggered the Fukushima Diiachi nuclear disaster. She was in Chiba prefecture - only 162 miles south of the power plant. It began melting down March 11, 2011 and she flew back to the USA March 15, 2011. Doctors told us this may or may not have caused the multiple myeloma. Really? Well it for sure didn't help! One thing we are certain of: Any way you slice it, nuclear meltdown radiation is bad news bears.
But I digress ... And back to the loving place.
Let me sum up and wrap up. Even though we generally seek homeopathic, integrative, holistic, alternatives first, we do believe God works through everything, which includes chemo / targeted drugs. We'd like to get her back on them - going to see her oncologist today.
She may be too frail to restart chemo - Weight is down to 103 lbs (47 kg) (she's 5'5" / 1.65 m and she weighed 137 lbs / 62 kg in 2014). I have not found kidney friendly weight gain foods or shakes. Her nephro says diet must be low sodium, low potassium, and low phosphorus.
She had her first acupuncture session at Vanderbilt's Osher Center on Tuesday and we have a second session this afternoon. (Two times weekly is the recommendation). The first session really helped her mental clarity.
Bless you for any advice, suggestions, invitations regarding the following laundry list:
1. Weight gain that is low sodium, low potassium, low phosphorus: She eats fish - but not usually red meat - although at this point she would eat a buffalo if it will help.
The dialysis center's dietitian recommend 70 grams of protein daily. A registered dietitian I found online said that sounds too high and may retard and prevent kidney recovery. She is suggesting 2 grams and amino acids, specifically two products, "Nutramine & Nutrsentials". Has anyone heard of or used amino acids or this company's products?
2. We used to live in West Hollywood CA and are tempted to drive out to get a protocol from Dr. Berenson. Any thoughts?
3. Nashville to CA is a 3 day drive for us (don't want to fly due to air pressure on organs / recovering kidneys, so perhaps Dr. Hari in Wisconson - only 9 hour drive.
3. We are only 4 hours from Atlanta: Emory?
4. Cancer Treatment Centers of America in Atlanta or anywhere?
4. High cut-off hemodialysis? Anyone tried it?
Our team in Nashville - Sarah Cannon Center - Tennessee Oncology are great - but we are not sure they are really the best group of myeloma specialists we could get, and I want to find my sweet "wife" the best match for her specific needs.
Really, we are open to going anywhere we can find a great onc and nephro and more naturopathic dietitian who will work as a team and support - provide - referrals to acupuncture, meditation, etc.
Thank you for your time and energy!
We are sending healing love & light to you right now!
ABUNDANT BLESSINGS!
LOVE! THRIVE! LAUGH!
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Advice welcome for new journey
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LoveThriveLaugh - Name: LoveThriveLaugh
- Who do you know with myeloma?: My Love/Life Partner
- When were you/they diagnosed?: Jan 7, 2015
- Age at diagnosis: 50
Re: Advice welcome for new journey
Emory would be a great place to at least get a second opinion. They are the forefront of a lot of multiple myeloma research and have some incredibly well respected docs in the field of multiple myeloma.
Dr. Berenson is one of the docs I see and is very adaptive regarding the kinds of drug treatments he suggests for any given patient. Maybe visit him and also take in a show at the Whiskey while you are there?
I personally think the world of Dr. B, but there are other great docs out there as well. You could explain your situation to his office and see if he would do a telephone consult (which he certainly will do if you have seen him at least once in person).
Once you get hooked up with a remote specialist, it is likely that your local doc would agree to work with the remote specialist so that you could then minimize travel going forward.
Cancer Treatment Centers of America aren't centers of excellence for multiple myeloma care.
What is your companion's current sodium and potassium levels? Are they at normal levels?
Dr. Berenson is one of the docs I see and is very adaptive regarding the kinds of drug treatments he suggests for any given patient. Maybe visit him and also take in a show at the Whiskey while you are there?
I personally think the world of Dr. B, but there are other great docs out there as well. You could explain your situation to his office and see if he would do a telephone consult (which he certainly will do if you have seen him at least once in person).Once you get hooked up with a remote specialist, it is likely that your local doc would agree to work with the remote specialist so that you could then minimize travel going forward.
Cancer Treatment Centers of America aren't centers of excellence for multiple myeloma care.
What is your companion's current sodium and potassium levels? Are they at normal levels?
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Advice welcome for new journey
Sorry to hear about your partner's diagnosis. My husband is a patient of Dr. Berenson and we think very highly of Dr. B and his staff. He was our second opinion doctor and we haven't looked back since. My husband is currently in a clinical trial and doing well. (Two people in the trial are in remission).
Like your partner, my husband also has kidney issues, although he never had to do dialysis. We were referred to a nephro by Dr. B. His name is Dr. Larry Froch (Cedars-Sinai). We are very happy with him as well.
In terms of diet, I have a friend with kidney disease who is trying to gain weight. She eats olive oil to add healthy fat to her diet. She also eats croissants and, when she makes sandwiches, she doubles up on the bread.
As for the acupuncture, there is a patient in Dr. B's office who says that his creatinine goes down a little bit when he does acupuncture twice a week. We tried acupuncture when we were first diagnosed, but haven't kept up with it because it was getting a bit costly and time consuming with all the other appointments we had, but we love our acupuncturist, Ken Ohashi, in West LA.
How fortuitous that your partner has you to take care of her!
Best wishes to you both,
Jeannie
Like your partner, my husband also has kidney issues, although he never had to do dialysis. We were referred to a nephro by Dr. B. His name is Dr. Larry Froch (Cedars-Sinai). We are very happy with him as well.
In terms of diet, I have a friend with kidney disease who is trying to gain weight. She eats olive oil to add healthy fat to her diet. She also eats croissants and, when she makes sandwiches, she doubles up on the bread.
As for the acupuncture, there is a patient in Dr. B's office who says that his creatinine goes down a little bit when he does acupuncture twice a week. We tried acupuncture when we were first diagnosed, but haven't kept up with it because it was getting a bit costly and time consuming with all the other appointments we had, but we love our acupuncturist, Ken Ohashi, in West LA.
How fortuitous that your partner has you to take care of her!
Best wishes to you both,
Jeannie
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Jean Ruth Howard - Name: Jeannie
- Who do you know with myeloma?: husband
- When were you/they diagnosed?: November 2012
- Age at diagnosis: 47
Re: Advice welcome for new journey
You might want to consider UAB Hospital, Birmingham, Ala. They have a top notch multiple myeloma staff. We use Dr. Shelton. My husband has gotten great care.
I agree with Multibilly, Cancer Treatment Centers of America are not the best center for multiple myeloma. Our local oncologist did not recommend them. I am sure they are good in other areas.
I agree with Multibilly, Cancer Treatment Centers of America are not the best center for multiple myeloma. Our local oncologist did not recommend them. I am sure they are good in other areas.
Re: Advice welcome for new journey
Thank you MultiBilly and Jean Ruth Howard! I really appreciate your thoughtful and thorough replies 
MultiBilly - On January 30th, her sodium was 127 and potassium 4.5. That's the most current readings I have on those. May be getting updated today after dialysis, or next week sometime.
I spoke with Dr. Berenson's office and, yes, you are both correct – I could take her to see him once and then he would give me a protocol for my local oncologist to follow.
I would love to return to my beloved California! Especially today, when it's 9 degrees and another ice storm may descend upon us tonight. At this point, I don't know if we have the time or ability to get out to California before the doctor wants to start the next round of chemo. He'd like to start next week.
I may call Dr. Hari - Minnesota - and Dr. Barlogie - Arkansas - who are both closer, and see if she can see them.
Ahh deep sigh.
So very grateful for you both, for this site, and for the faith that life is good - in, through, and as all of this.
ABUNDANT BLESSINGS!
Oxo - Colette
MultiBilly - On January 30th, her sodium was 127 and potassium 4.5. That's the most current readings I have on those. May be getting updated today after dialysis, or next week sometime.
I spoke with Dr. Berenson's office and, yes, you are both correct – I could take her to see him once and then he would give me a protocol for my local oncologist to follow.
I would love to return to my beloved California! Especially today, when it's 9 degrees and another ice storm may descend upon us tonight. At this point, I don't know if we have the time or ability to get out to California before the doctor wants to start the next round of chemo. He'd like to start next week.
I may call Dr. Hari - Minnesota - and Dr. Barlogie - Arkansas - who are both closer, and see if she can see them.
Ahh deep sigh.
So very grateful for you both, for this site, and for the faith that life is good - in, through, and as all of this.
ABUNDANT BLESSINGS!
Oxo - Colette
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LoveThriveLaugh - Name: LoveThriveLaugh
- Who do you know with myeloma?: My Love/Life Partner
- When were you/they diagnosed?: Jan 7, 2015
- Age at diagnosis: 50
Re: Advice welcome for new journey
So, that is a pretty low sodium level (I am assuming the sodium value is showing up as "low" on the lab report, since most labs consider anything below 135 mEq/L or 136 mEq/L to be out of range). A low sodium level can cause disorientation. My sister was hyponatremic (low sodium) when she had ovarian cancer, and her behavior was much like your companion's behavior. It was easily fixed by bumping up her sodium levels with an IV saline solution.
However, your companion's low sodium level could potentially be explained by a benign phenomenon that sometimes happens with multiple myeloma known as pseudohyponatremia (which I have). Her doc can verify if she is truly hyponatremic or pseudohyponatremic by running what is called a serum osmolality test and then plugging the results into a standard formula.
Just a thought to explore with the doc ....
However, your companion's low sodium level could potentially be explained by a benign phenomenon that sometimes happens with multiple myeloma known as pseudohyponatremia (which I have). Her doc can verify if she is truly hyponatremic or pseudohyponatremic by running what is called a serum osmolality test and then plugging the results into a standard formula.
Just a thought to explore with the doc ....
Last edited by Multibilly on Fri Feb 20, 2015 4:41 pm, edited 1 time in total.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Advice welcome for new journey
As always you have gotten good information and suggestions.
The one thing that concerns me about considering going to California for a consult with Dr. Berenson is the time that it would take you to get there. Your partner is in fragile health and on dialysis. Do you want to risk her going into a health crisis along the way and having to deal with unfamiliar doctors and hospitals? What would you do about dialysis during the drive and then while you are in California?
You have some excellent myeloma centers much closer to you that might be better at present. Emory, of course, Vanderbilt, University of North Carolina, etc. It would be better to get your partner stable and on a good regimen that works for her and then maybe consider heading to one of the more distant centers if you still feel a need.
It isn't uncommon for people to get 2,3,4 opinions. Of course, with getting that many, you have to sift through all of the information that you are given and possibly that many different ideas of how to treat. Don't rush into anything right now while your partner is still so sick. I know that you want to do everything that you possibly can to help, but sometimes staying the course is the best at the moment.
Acupuncture certainly can't hurt and probably can help some of the problems that your partner is experiencing. If you haven't included Reiki in her program, I would suggest that, too. Also, encourage her to continue with her daily meditation as much as possible. That helps me immensely when I am in one of my crises. Does it make my medical condition change? I don't know, but it sure does help my mental condition and spares me from lapsing into depression. I would also suggest that you find a support group for people and their caregivers who have myeloma.
Sending you and your partner the best to get through this crisis and to find the path that works the best for both of you while you travel this new part of your life's journey.
Nancy in Phila
The one thing that concerns me about considering going to California for a consult with Dr. Berenson is the time that it would take you to get there. Your partner is in fragile health and on dialysis. Do you want to risk her going into a health crisis along the way and having to deal with unfamiliar doctors and hospitals? What would you do about dialysis during the drive and then while you are in California?
You have some excellent myeloma centers much closer to you that might be better at present. Emory, of course, Vanderbilt, University of North Carolina, etc. It would be better to get your partner stable and on a good regimen that works for her and then maybe consider heading to one of the more distant centers if you still feel a need.
It isn't uncommon for people to get 2,3,4 opinions. Of course, with getting that many, you have to sift through all of the information that you are given and possibly that many different ideas of how to treat. Don't rush into anything right now while your partner is still so sick. I know that you want to do everything that you possibly can to help, but sometimes staying the course is the best at the moment.
Acupuncture certainly can't hurt and probably can help some of the problems that your partner is experiencing. If you haven't included Reiki in her program, I would suggest that, too. Also, encourage her to continue with her daily meditation as much as possible. That helps me immensely when I am in one of my crises. Does it make my medical condition change? I don't know, but it sure does help my mental condition and spares me from lapsing into depression. I would also suggest that you find a support group for people and their caregivers who have myeloma.
Sending you and your partner the best to get through this crisis and to find the path that works the best for both of you while you travel this new part of your life's journey.
Nancy in Phila
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NStewart - Name: Nancy Stewart
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 3/08
- Age at diagnosis: 60
Re: Advice welcome for new journey
There's a lot of wisdom in Nancy's words regarding the risk of a big road trip given your companion's current state of health. It is a very good point to consider.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Advice welcome for new journey
There are a number of places across the country with myeloma expertise, as stated in the postings above. All would be more than happy to help out in your partner's care. A number of the Advisors on the Beacon are quite close to you, and I would recommend anyone of them.
However, if you your partner continues to progress, i would recommend that she initiate therapy locally to get her disease under control and, hopefully, stop further damage to her organs before things get too bad. Even while your partner is receiving therapy – a combination of 2 or 3 agents (typically Velcade-dex, Revlimid-dex, Revlimid-Velcade-dex, or Velcade-Cytoxan-dex) is pretty standard for multiple myeloma induction therapy – you can seek other opinions. Induction therapy (or primary therapy) is just the beginning of the journey.
Second opinions are very important, especially with a center with multiple myeloma expertise, but sometimes the disease dictates when we can utilize them. So, please, just be careful.
Best of luck.
However, if you your partner continues to progress, i would recommend that she initiate therapy locally to get her disease under control and, hopefully, stop further damage to her organs before things get too bad. Even while your partner is receiving therapy – a combination of 2 or 3 agents (typically Velcade-dex, Revlimid-dex, Revlimid-Velcade-dex, or Velcade-Cytoxan-dex) is pretty standard for multiple myeloma induction therapy – you can seek other opinions. Induction therapy (or primary therapy) is just the beginning of the journey.
Second opinions are very important, especially with a center with multiple myeloma expertise, but sometimes the disease dictates when we can utilize them. So, please, just be careful.
Best of luck.
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Dr. Ken Shain - Name: Ken Shain, M.D., Ph.D.
Beacon Medical Advisor
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