I had my doctors appointment and my cancer numbers continued to go down. They are the same that they were right after my bone marrow transplant 1 1/2 years ago.
My kidneys improved too! My creatinine was down to 1.372133. (The highest lab result was 3.1 and it had never been under 1.7 since I was diagnosed with multiple myeloma). I saw my chart and they changed me from Stage !V Chronic Kidney Disease to Stage 3. .
Creatinine clearance is supposed to be an estimate of how much kidney function and when I was first diagnosed it was 33%. After I started the first drugs right after I was diagnosed it was usually around 25% and when it went down to 20% my nephrologist showed me a movie on dialysis choices. My labs now show 44.77%!
The only bad news was that while my WBC went up a bit (2.44), my absolute neutrophil count (ANC) was down to 1013.
So, my oncologist told me to not take any more Revlimid until I see him in 4 weeks because my WBC is so low and I had the kidney infection and now have a cold. He wants me to get healthier.
So, I think this diet is good for my kidneys and cancer - so I just need to keep with it and see what my labs looks like in 4 weeks with no Revlimid.
Forums
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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: Ketogenic diet and multiple myeloma
That is great news Cathy. It must be rewarding to see results from your efforts. I suppose it kind of makes going to the doctor something to look forward to for a change. Your white blood cell counts are typical for me after two and a half years of Revlimid. Good to see you are doing well overall.
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Eric Hofacket - Name: Eric H
- When were you/they diagnosed?: 01 April 2011
- Age at diagnosis: 44
Re: Ketogenic diet and multiple myeloma
Hi Cathy,
Glad to hear your appointment went well.
Overall the diet seems to be working for you and I believe your Dr realizes that too. It is very encouraging to see your kidneys have improved!
Between no Revlimid and the diet, I think you will see even further improvement in the weeks to come!
Keep up the great work Cathy!
Thoughts & prayers are with you.
Kim
Glad to hear your appointment went well.
Overall the diet seems to be working for you and I believe your Dr realizes that too. It is very encouraging to see your kidneys have improved!
Between no Revlimid and the diet, I think you will see even further improvement in the weeks to come!
Keep up the great work Cathy!
Thoughts & prayers are with you.
Kim
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Jerseygyrl - Name: Kim
- Who do you know with myeloma?: My Loved One
- When were you/they diagnosed?: February 2014
- Age at diagnosis: 58
Re: Ketogenic diet and multiple myeloma
Hey Eric,
My oncologist is not the specialist who was in charge of my bone marrow transplant, because I live in a small town. He monitors several patients with multiple myeloma or who have had a BMT/SCT who are from different primary multiple myeloma doctors. He said some doctors do not prescribe Revlimid after 2 years.
I also know there is a lower dosage of Revlimid available now - 2.5 mg. Any chance your doctor would lower your dosage? It is scary to be so vulnerable to infection - like you said, many people who die from multiple myeloma actually die from infections.
Good luck
My oncologist is not the specialist who was in charge of my bone marrow transplant, because I live in a small town. He monitors several patients with multiple myeloma or who have had a BMT/SCT who are from different primary multiple myeloma doctors. He said some doctors do not prescribe Revlimid after 2 years.
I also know there is a lower dosage of Revlimid available now - 2.5 mg. Any chance your doctor would lower your dosage? It is scary to be so vulnerable to infection - like you said, many people who die from multiple myeloma actually die from infections.
Good luck
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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: Ketogenic diet and multiple myeloma
Hi Jerseygyrl.
You must have been a cheerleader in school because you are always encouraging me
.
Thank you!
Actually, it was pretty cool - my nephrologist actually called me at work and congratulated me for my good kidney numbers.
Have a great day!
You must have been a cheerleader in school because you are always encouraging me
.Thank you!
Actually, it was pretty cool - my nephrologist actually called me at work and congratulated me for my good kidney numbers.
Have a great day!
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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: Ketogenic diet and multiple myeloma
I had another blood test yesterday and will find out results at my appointment Monday July 28th. I have not had any Revlimid this month because my cancer numbers were way down and my WBC count was really low. If my cancer numbers are really low Monday, I am going to ask my oncologist if I can stay off Revlimid and just continue this diet.
My daughter wants me to start a blog of exactly what I eat and some of my recipes. She said she has told friends who have loved ones with cancer and they have a hard time understanding what I am eating. When my oncologists' nurse wanted me to go to a dietician, my oncologist (I LOVE him) said, "no! don't let someone else tell you want to do - keep doing whatever you are doing". I have nothing to sell, nothing to prove, I just have been having a really good remission since I have made these changes.
I also weaned myself off omeprazole [Prilosec, Losec] and have not had C. diff again for almost a year - and I could share how I did those.
I will let you know if I start a blog.
My daughter wants me to start a blog of exactly what I eat and some of my recipes. She said she has told friends who have loved ones with cancer and they have a hard time understanding what I am eating. When my oncologists' nurse wanted me to go to a dietician, my oncologist (I LOVE him) said, "no! don't let someone else tell you want to do - keep doing whatever you are doing". I have nothing to sell, nothing to prove, I just have been having a really good remission since I have made these changes.
I also weaned myself off omeprazole [Prilosec, Losec] and have not had C. diff again for almost a year - and I could share how I did those.
I will let you know if I start a blog.
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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: Ketogenic diet and multiple myeloma
Hi Cathy,
I agree with your daughter, you should definitely start a blog! It would be helpful to a lot of people to know exactly what you're eating and sharing your recipes. I hope you'll give it some serious thought.
Looking forward to hearing the results of your blood test!
Keep up the great work!!
Kim
I agree with your daughter, you should definitely start a blog! It would be helpful to a lot of people to know exactly what you're eating and sharing your recipes. I hope you'll give it some serious thought.
Looking forward to hearing the results of your blood test!
Keep up the great work!!
Kim
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Jerseygyrl - Name: Kim
- Who do you know with myeloma?: My Loved One
- When were you/they diagnosed?: February 2014
- Age at diagnosis: 58
Re: Ketogenic diet and multiple myeloma
Hi guys!
I had my doctors appointment yesterday and I was in the normal range for kappa free light chains for the first time since right after my bone marrow transplant! Thank You, Lord!!!
So, I am looking into starting a blog with my recipes each day. I find there are several "hosts" and I could use BlogSpot (which is through Google now) or Weebly, which I have used before.
Does anyone have any suggestions?
A name I am thinking of using is "CANCERvive Eating".
Here is a recipe for "mock potatoe salad" I made last night with my "juicy Lucy" hamburgers.
Take 1 head cauliflower, cut in 1/2 and cut leaves off bottom. Put 1/2 of head with florets broken apart and 2 T water in a microwave zip lock bag for vegetables. Cook 7 min, then cook the other half for 7 min. Then cool and dice. Mix with 1 c mayonnaise, 4 hard boiled eggs, 2 T vinegar, 1 T mustard, 1/2 package of hidden valley dip mix, 5 stalks chopped celery & 1/4 c ch onions.
A "juicy Lucy" is made with 2 very thin hamburger patties, then you put cheese, bacon & thin slices of bell peppers & onions inside, put top patty over bottom patty and seal edges, put each in a piece of foil and cook on grill about 20 minutes.
Hubby gets his in a bun, I just eat mine plain.
I had my doctors appointment yesterday and I was in the normal range for kappa free light chains for the first time since right after my bone marrow transplant! Thank You, Lord!!!
So, I am looking into starting a blog with my recipes each day. I find there are several "hosts" and I could use BlogSpot (which is through Google now) or Weebly, which I have used before.
Does anyone have any suggestions?
A name I am thinking of using is "CANCERvive Eating".
Here is a recipe for "mock potatoe salad" I made last night with my "juicy Lucy" hamburgers.
Take 1 head cauliflower, cut in 1/2 and cut leaves off bottom. Put 1/2 of head with florets broken apart and 2 T water in a microwave zip lock bag for vegetables. Cook 7 min, then cook the other half for 7 min. Then cool and dice. Mix with 1 c mayonnaise, 4 hard boiled eggs, 2 T vinegar, 1 T mustard, 1/2 package of hidden valley dip mix, 5 stalks chopped celery & 1/4 c ch onions.
A "juicy Lucy" is made with 2 very thin hamburger patties, then you put cheese, bacon & thin slices of bell peppers & onions inside, put top patty over bottom patty and seal edges, put each in a piece of foil and cook on grill about 20 minutes.
Hubby gets his in a bun, I just eat mine plain.
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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: Ketogenic diet and multiple myeloma
A quick update is that my oncologist still wants me to go on 1/2 dose of Revlimid and I agreed to. So, I will start back on 2.5 mg Revlimid every other day. My kidneys are damaged, so it takes them longer to process drugs, so 1/2 dose for me is probably a full dose for someone with good kidneys.
I also asked my doctor more about what I thought he said about doctors not prescribing Revlimid after 2 years and he said I had misunderstood him. He said that most doctors continue to prescribe Revlimid but most studies of Revlimid stop after 2 years.
Last thing is that I know I will not be able to think I am "cured". Cancer looks over my shoulder all the time and I still shed a tear at night when I think of dying. But, I have found that for me, the way to overcome the sadness is to think with an "eternal perspective". I am a Christian and I trust that this life is not the end, so the end of the story is not at the end of my life here on earth.
But, it is SOOO worth it to just change my diet and have that help!
I also asked my doctor more about what I thought he said about doctors not prescribing Revlimid after 2 years and he said I had misunderstood him. He said that most doctors continue to prescribe Revlimid but most studies of Revlimid stop after 2 years.
Last thing is that I know I will not be able to think I am "cured". Cancer looks over my shoulder all the time and I still shed a tear at night when I think of dying. But, I have found that for me, the way to overcome the sadness is to think with an "eternal perspective". I am a Christian and I trust that this life is not the end, so the end of the story is not at the end of my life here on earth.
But, it is SOOO worth it to just change my diet and have that help!
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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: Ketogenic diet and multiple myeloma
Wow Cathy! I took a look at your blog and I am very impressed! A true labor of love. Awesome!
Your story and sharing what has worked so well for you is a true inspiration. I know this will be a great resource to those battling multiple myeloma.
I pray you continue to see good results.
Thank you again for sharing.
God bless you,
Kim
Your story and sharing what has worked so well for you is a true inspiration. I know this will be a great resource to those battling multiple myeloma.
I pray you continue to see good results.
Thank you again for sharing.
God bless you,
Kim
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Jerseygyrl - Name: Kim
- Who do you know with myeloma?: My Loved One
- When were you/they diagnosed?: February 2014
- Age at diagnosis: 58
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