Nanjeanne-
You sound much more relaxed about your husband's condition and proposed course of treatment for now. The really positive thing that you posted is that both of you are looking forward to doing a wonderful birthday trip to Rome. When you begin to plan ahead like that you are well on your way to learning how to live with myeloma in your life.
Have a wonderful day,
Nancy in Phila
Forums
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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: Numbers aren't changing 90 days post SCT
Thought I'd post a brief update as we are now 5 months from my husband's ASCT and one month into Revlimid maintenance of 10 mg 21 days on - 7 days off.
Latest M-spike measured 0.3 g/dL. As I mentioned just before he started maintenance his M-spike was 0.4 (which it was also at 90 days as well as right before ASCT). Seeing it drop even this tiny amount was cause for us to feel optimistic that it might still continue to drop as many of you have told me might happen. Fingers crossed!
Kappa/Lambda is also now normal at Kappa 0.74 mg/dl and Lambda 0.64 and Ratio 1.16 (these were both surpressed on 8/12).
Unfortunately his immunoglobulins are still surpressed at IgG: 683 IgM: 17 and IgA: 24. With the m-spike of .3 that leaves his healthy IgG low but doctor doesn't want to do give him any infusion unless he feels like he is getting sick (which thank goodness he doesn't). We know the Revlimid can surpress these so we will keep watch on it. His WBC also came down to 3.1 from what it was but we understand this too can be affected by the Revlimid.
One thing our Yale doctor mentioned was upping the 10 mg Rev to 15 to try to knock the m-spike down lower. We see Dana Farber doctor end October and will discuss with him as well. My concern is certainly during the winter months having his immunoglobulins and WBC low and exposing him to even more risk of infection or illness. So while we would love to kick this m-spike to the curb - I don't want to add more infection risk or fatigue - especially while he is feeling so strong only 5 months post . . . and more importantly, since we booked our airline tickets for Rome leaving at end November and staying the first week of December!
Latest M-spike measured 0.3 g/dL. As I mentioned just before he started maintenance his M-spike was 0.4 (which it was also at 90 days as well as right before ASCT). Seeing it drop even this tiny amount was cause for us to feel optimistic that it might still continue to drop as many of you have told me might happen. Fingers crossed!
Kappa/Lambda is also now normal at Kappa 0.74 mg/dl and Lambda 0.64 and Ratio 1.16 (these were both surpressed on 8/12).
Unfortunately his immunoglobulins are still surpressed at IgG: 683 IgM: 17 and IgA: 24. With the m-spike of .3 that leaves his healthy IgG low but doctor doesn't want to do give him any infusion unless he feels like he is getting sick (which thank goodness he doesn't). We know the Revlimid can surpress these so we will keep watch on it. His WBC also came down to 3.1 from what it was but we understand this too can be affected by the Revlimid.
One thing our Yale doctor mentioned was upping the 10 mg Rev to 15 to try to knock the m-spike down lower. We see Dana Farber doctor end October and will discuss with him as well. My concern is certainly during the winter months having his immunoglobulins and WBC low and exposing him to even more risk of infection or illness. So while we would love to kick this m-spike to the curb - I don't want to add more infection risk or fatigue - especially while he is feeling so strong only 5 months post . . . and more importantly, since we booked our airline tickets for Rome leaving at end November and staying the first week of December!
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Nanjeanne - Name: Nanjeanne
- Who do you know with myeloma?: My Husband
- When were you/they diagnosed?: April 2014
- Age at diagnosis: 66
Re: Numbers aren't changing 90 days post SCT
Hi Nanjeanne.
While you are doing all that your doctors recommend, here are a few tips for things you can do.
1. No artificial sweeteners: Dr. James Berenson, who is the Medical & Scientific Director as well as the Chief Executive Officer of Oncotherapeutics and the IMBCR, or Institute for Myeloma & Bone Cancer Research. Dr. Berenson writes: Myeloma patients ask what to eat and not eat. My #1 tip. Get rid of the artificial sweeteners! When pressed to clarify he said a little stevia in tea a couple of times a day is OK
2. Have him eat a "diabetic diet" to keep his blood glucose low and steady
3. MSG and other sources of free glutamate;
Various Ingredients Containing Free Glutamate (MSG) :
Auxi grow sprayed on conventional fruits and vegetables
Barley malt
Bouillon and broth
Brown rice syrup
Calcium caseinate, Sodium caseinate
Calcium glutamate (E 623)
Carrageenan (E 407)
Citric acid, Citrate (E 330)
Corn starch
Corn syrup
Dextrose
Enriched (anything)
Enzyme modified (anything)
Enzymes (anything)
Fermented protein (any)
Flavors or flavoring [i.e. natural flavors, raspberry flavor, vanilla flavor,]
Gelatin
Glutamic acid (E 620), Glutamate (E 620)
Hydrolyzed (anything)
Hydrolyzed protein (any)
Lipolyzed butter fat
Magnesium glutamate (E 625)
Malt extract
Maltodextrin
Milk powder, reduced fat milk (skim; 1%; 2% most things low fat or no fat
Modified food starch
Monoammonium glutamate (E 624)
Monopotassium glutamate (E 622)
Monosodium glutamate (E 621)
Natrium glutamate
Pectin (E 440)
Protease
Protein fortified (anything)
Rice syrup
Seasonings / spices
Soy protein isolate
Soy protein, soy protein concentrate
Soy sauce
Soy sauce extract
Stock
Textured protein
Ultra-¬‐pasteurized any protein
Vetsin
Vitamin enriched
Whey protein isolate
Whey protein, whey protein concentrate
Xanthum gum
Yeast (autolyzed)
Yeast extract
Yeast food, yeast nut
I hope he improves.
Cathy
While you are doing all that your doctors recommend, here are a few tips for things you can do.
1. No artificial sweeteners: Dr. James Berenson, who is the Medical & Scientific Director as well as the Chief Executive Officer of Oncotherapeutics and the IMBCR, or Institute for Myeloma & Bone Cancer Research. Dr. Berenson writes: Myeloma patients ask what to eat and not eat. My #1 tip. Get rid of the artificial sweeteners! When pressed to clarify he said a little stevia in tea a couple of times a day is OK
2. Have him eat a "diabetic diet" to keep his blood glucose low and steady
3. MSG and other sources of free glutamate;
Various Ingredients Containing Free Glutamate (MSG) :
Auxi grow sprayed on conventional fruits and vegetables
Barley malt
Bouillon and broth
Brown rice syrup
Calcium caseinate, Sodium caseinate
Calcium glutamate (E 623)
Carrageenan (E 407)
Citric acid, Citrate (E 330)
Corn starch
Corn syrup
Dextrose
Enriched (anything)
Enzyme modified (anything)
Enzymes (anything)
Fermented protein (any)
Flavors or flavoring [i.e. natural flavors, raspberry flavor, vanilla flavor,]
Gelatin
Glutamic acid (E 620), Glutamate (E 620)
Hydrolyzed (anything)
Hydrolyzed protein (any)
Lipolyzed butter fat
Magnesium glutamate (E 625)
Malt extract
Maltodextrin
Milk powder, reduced fat milk (skim; 1%; 2% most things low fat or no fat
Modified food starch
Monoammonium glutamate (E 624)
Monopotassium glutamate (E 622)
Monosodium glutamate (E 621)
Natrium glutamate
Pectin (E 440)
Protease
Protein fortified (anything)
Rice syrup
Seasonings / spices
Soy protein isolate
Soy protein, soy protein concentrate
Soy sauce
Soy sauce extract
Stock
Textured protein
Ultra-¬‐pasteurized any protein
Vetsin
Vitamin enriched
Whey protein isolate
Whey protein, whey protein concentrate
Xanthum gum
Yeast (autolyzed)
Yeast extract
Yeast food, yeast nut
I hope he improves.
Cathy
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antelope1225 - Name: Cathy1225
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: May 25 2012
- Age at diagnosis: 55
Re: Numbers aren't changing 90 days post SCT
Thanks Cathy. Will definitely keep all this in mind. We are lucky that we have always eaten quite healthy. No artificial sweeteners but a little stevia every now and again so glad a little in iced tea is not a bad thing. We juice and eat lots of kale and broccoli and exercise. We don't use artificial or processed food if we can help it. I think our healthy eating diet and exercise was very instrumental in my husband's ease with the ASCT and his regaining his strength so soon. The hardest part of the diet when he was released was the fact that it was so contrary to the way we normally eat -- all that "shelf ready" stuff with all those chemicals!
But I will look over your recommendations and try to incorporate what I can into our diet.
Appreciate the time you took to write such detailed info for us. Thanks.
But I will look over your recommendations and try to incorporate what I can into our diet.
Appreciate the time you took to write such detailed info for us. Thanks.
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Nanjeanne - Name: Nanjeanne
- Who do you know with myeloma?: My Husband
- When were you/they diagnosed?: April 2014
- Age at diagnosis: 66
Re: Numbers aren't changing 90 days post SCT
Hi Nanjeanne.
It sounds like that will not be a big step for you. I had read that glucose and glutamine are the primary fuels for most cancers - but assumed that if I didn't eat much meat, I was fine as far as glutamine. A couple of weeks ago I found that glutamine turns into glutamate and "unbound glutamate" is used for flavoring but stimulates cancer!
So, I went through kitchen and threw out whey protein and nutritional yeast I had been putting in smoothies, and got rid of all Hidden Valley packaged mixes and gravy mixes.
Cathy
It sounds like that will not be a big step for you. I had read that glucose and glutamine are the primary fuels for most cancers - but assumed that if I didn't eat much meat, I was fine as far as glutamine. A couple of weeks ago I found that glutamine turns into glutamate and "unbound glutamate" is used for flavoring but stimulates cancer!
So, I went through kitchen and threw out whey protein and nutritional yeast I had been putting in smoothies, and got rid of all Hidden Valley packaged mixes and gravy mixes.
Cathy
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antelope1225 - Name: Cathy1225
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: May 25 2012
- Age at diagnosis: 55
Re: Numbers aren't changing 90 days post SCT
Hi Nanjeanne,
Thanks for the update. Glad to hear that your husband's m-spike has gone down some.
My doctor started me at 10 mg for Revlimid maintenance and then upped it to 15 mg after I had tolerated the 10 mg for 2 or 3 months. Sounds similar to what your husband's doctor is suggesting. And my m-spike went down from 0.4 to 0 during the time I was on Revlimid maintenance. I hope your husband's does too!
One other thing - my doctor has mainly been concerned with my Absolute Neutrophil Count (ANC) as the primary measure of my immune system's health, so that might be another number for you to follow with your husband's CBC.
Best wishes, and have great trip to Rome!
Mike
Thanks for the update. Glad to hear that your husband's m-spike has gone down some.
My doctor started me at 10 mg for Revlimid maintenance and then upped it to 15 mg after I had tolerated the 10 mg for 2 or 3 months. Sounds similar to what your husband's doctor is suggesting. And my m-spike went down from 0.4 to 0 during the time I was on Revlimid maintenance. I hope your husband's does too!
One other thing - my doctor has mainly been concerned with my Absolute Neutrophil Count (ANC) as the primary measure of my immune system's health, so that might be another number for you to follow with your husband's CBC.
Best wishes, and have great trip to Rome!
Mike
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mikeb - Name: mikeb
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 2009 (MGUS at that time)
- Age at diagnosis: 55
Re: Numbers aren't changing 90 days post SCT
Cathy1225:
Regarding that very long list, I am assuming these are things to avoid? My goodness, what is left?
Regarding that very long list, I am assuming these are things to avoid? My goodness, what is left?
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Halches - Name: Carol S
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: 7/15
- Age at diagnosis: 73
Re: Numbers aren't changing 90 days post SCT
I know Carol. Actually it is probably impossible to avoid all the things on this list (unless you don't eat anything that is packaged) - but sometimes you can choose between 2 products and one has a couple of these in first couple ingredients and other product doesn't have any or has one listed #5 in the ingredients. I found a blog of a biochemist who cured her daughters autism by avoiding all of these and gluten and milk products (which also have a high proportion of unbound glutamate)
My oncologist says I am a fanatic, but it is working for me. I am approaching 3 year anniversary of ASCT and my cancer markers are low and I am not taking any maintenance drugs at this time.
I thought there might be another fanatic on the forum
Cathy
My oncologist says I am a fanatic, but it is working for me. I am approaching 3 year anniversary of ASCT and my cancer markers are low and I am not taking any maintenance drugs at this time.
I thought there might be another fanatic on the forum
Cathy
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antelope1225 - Name: Cathy1225
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: May 25 2012
- Age at diagnosis: 55
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