I am a 55 year old woman who has been amazingly healthy for my whole life. I have 3 adult children and a wonderful husband of 32 years. My kidney numbers started going off the chart 2 1/2 years ago at a routine annual community blood work place in town. But last year my mother went into a nursing home and I was distracted by that and did not discuss my kidney numbers with my primary care taker! This year the numbers were worse and I called my doctor. She was shocked and said my kidneys were only working at 30% if the numbers were right.
All April and May my emotions were up and down and fear and anxiety were constant. It seemed a constant dribble of bad news. I had an ultrasound of kidneys with lots of scarring. Then had skeletal survey, with small lesions in 3 places. Then a bone marrow and fat tab biopsy.. Then a kidney biopsy, which was sent off to Mayo Clinic. One Memorial day weekend, my kidney doctor called me at home (bless him for calling me at home) and told me my kidneys are at stage IV (25-30% function) and my myeloma was confirmed. The oncologist said I am at stage III myeloma.
My head was swimming. I am a Christian and have taught Sunday School for 19 years, but suddenly to realize I may not have a long healthy life has been tough. Everyone dies and I know that no one escapes death, but it is like I lost 25 years of my life. I am suddenly thinking like an old person. I do have a relationship with Jesus and feel comforted by that, but even approaching the Lord in prayer is different now. More serious and more sober. I think of what CS Lewis said: I pray to You not as I think You are, but as You know Yourself to Be.
I was put on kidney medicine in April and started the dex (just 2 a day at first) right away. Now I take 10 dex (40 mg) for 4 days on and then 4 days off. I am getting a lot done when I am feeling like a speed freak, but crash when I am off. I have 100 mg thalidomide every 3rd day, and that makes me feel drunk or stoned for 24 hours. And I have 2 Velcade shots every other week.
Unfortunately, I got a kidney infection June 8, but it seems to have cleared up.
My potassium and sodium were way off in a blood test from Friday. So they called and told me to eat something salty and really watch the potassium and come for another blood test Monday.
Friday I go see my oncologist to see how this is doing.
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: New member
Hi Cathy. It's not much fun to be a 'newbie' with myeloma and it's issues! I hope that the appointment with the oncologist shows improvement that way, after your initial treatments. Are you seeing a hematological oncologist or myeloma specialist?
Because you were so healthy before this and have such a strong spiritual core to fall back on, that will help you with this struggle. Best wishes to you and your family!
Because you were so healthy before this and have such a strong spiritual core to fall back on, that will help you with this struggle. Best wishes to you and your family!
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: New member
Thank you,Nancy 
. What a nice response. I am so glad to find this forum
. What a nice response. I am so glad to find this forum-
antelope1225 - Name: Cathy1225
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: May 25 2012
- Age at diagnosis: 55
Re: New member
Just a little over a year ago I began my myeloma journey. When I was diagnosed my kidney function was only about 50%. I was considered stage 3. But every treatment seemed to work (i.e. 6 3-week rounds of Revlimid-dex-Velcade, then high dose Cytoxan (cyclophosphamide), stem cell transplant with melphalan). Before the year was out, I was in complete remission -- no evidence at all of myeloma in the bone marrow biopsy. And now I am 9 months out from the stem cell transplant and I don't feel like someone who ever had cancer.
I don't do maintenance therapy, so the only drugs I am taking for this whole cancer adventure are antivirals (required for a year after the stem cell transplant) and gabapentin for neuropathy caused by the Velcade, which isn't even very bad anymore. My kidney function is much better as well.
I can't say it was fun during the treatment but, for me, it is over, at least for a while, and I am going to enjoy my remission for as long as I can. I am back to work full time and my life is pretty much as it was before.
I don't do maintenance therapy, so the only drugs I am taking for this whole cancer adventure are antivirals (required for a year after the stem cell transplant) and gabapentin for neuropathy caused by the Velcade, which isn't even very bad anymore. My kidney function is much better as well.
I can't say it was fun during the treatment but, for me, it is over, at least for a while, and I am going to enjoy my remission for as long as I can. I am back to work full time and my life is pretty much as it was before.
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mowgli18 - Name: Mowgli18
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: March 2011
- Age at diagnosis: 51
Re: New member
That is very encouraging to hear how good you feel now that you are in remission.
I had my doctor appointment today. I found out that it will probably take 3-6 months to get my kidneys healthy enough to do the stem cell replacement. My kidneys are not doing well - and I kept going into hyponatremia this week. My potassium is too high and sodium too low and i feel very light headed Luckily, I had blood tests sent to a kidney doctor too, and he said my blood is too acidic and prescribed sodium bicarbonate twice a day 650 mg.
My oncologists will send me to Denver for the actual stem cell replacement and blood cancer institute (I think he said). He said that is when I will lose my hair (and I cried). But he said the hair will grow back.
One great piece of news is that they don't drill in your bones to get stem cells (I pictured Wolverine from the X men). Now they get the stem cells through blood. What a relief.
I am glad to have a while of no huge new challenges. Just healing up from the 3 biopsies (fat tab, bone marrow, kidney) and feeling better about meds. If I have thalidomide on the same day as dex, they sort of cancel each other out.
I had my doctor appointment today. I found out that it will probably take 3-6 months to get my kidneys healthy enough to do the stem cell replacement. My kidneys are not doing well - and I kept going into hyponatremia this week. My potassium is too high and sodium too low and i feel very light headed Luckily, I had blood tests sent to a kidney doctor too, and he said my blood is too acidic and prescribed sodium bicarbonate twice a day 650 mg.
My oncologists will send me to Denver for the actual stem cell replacement and blood cancer institute (I think he said). He said that is when I will lose my hair (and I cried). But he said the hair will grow back.
One great piece of news is that they don't drill in your bones to get stem cells (I pictured Wolverine from the X men). Now they get the stem cells through blood. What a relief.
I am glad to have a while of no huge new challenges. Just healing up from the 3 biopsies (fat tab, bone marrow, kidney) and feeling better about meds. If I have thalidomide on the same day as dex, they sort of cancel each other out.
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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: New member
Hi Cathy, I am glad to know that you are getting your treatments organized and really hope that all goes better for you too.
I didn't know much about myeloma when I started my 'journey' three years ago either. I remember now that before I had the ASCT, at the time of that bone marrow biopsy, my chromosomes were also tested to see if they had deletions. It didn't mean much to me at the time, but now, after so much reading and learning (mostly thanks to this site!), I realize that one's chromosomal makeup can have a bearing on treatments also.
Did you know that you can post questions on the forums also, and a physician (or someone else very knowledgeable) will often reply to you! That is invaluable actually!
I didn't know much about myeloma when I started my 'journey' three years ago either. I remember now that before I had the ASCT, at the time of that bone marrow biopsy, my chromosomes were also tested to see if they had deletions. It didn't mean much to me at the time, but now, after so much reading and learning (mostly thanks to this site!), I realize that one's chromosomal makeup can have a bearing on treatments also.
Did you know that you can post questions on the forums also, and a physician (or someone else very knowledgeable) will often reply to you! That is invaluable actually!
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: New member
Hi Cathy (or do you prefer to go by antelope?),
I'm 54, have three adult children, happily married for 31 years, and was very healthy when diagnosed a year and a half ago - very similar to your situation. I'm very sorry that you have to go through this. It will be very daunting and chaotic for the first few months, but as you learn more and hopefully connect with people in similar situations, it should calm down.
I agree with Nancy's suggestions to post questions. There is probably little, if anything, you'll be going through that someone else has not also gone through, and the feedback you'll get can be of great help and comfort.
I would also recommend going back through some of the columns written by contributors to the Beacon site. Most of them are relating their myeloma journeys and may give you an idea of what to expect, particularly some of the early columns by each, since those are the ones that typically discuss the initial part of the journey. You'd be surprised at how many people post responses indicating how much they relate to what's been written and find comfort in knowing they're not alone in what they're going through.
I'm 54, have three adult children, happily married for 31 years, and was very healthy when diagnosed a year and a half ago - very similar to your situation. I'm very sorry that you have to go through this. It will be very daunting and chaotic for the first few months, but as you learn more and hopefully connect with people in similar situations, it should calm down.
I agree with Nancy's suggestions to post questions. There is probably little, if anything, you'll be going through that someone else has not also gone through, and the feedback you'll get can be of great help and comfort.
I would also recommend going back through some of the columns written by contributors to the Beacon site. Most of them are relating their myeloma journeys and may give you an idea of what to expect, particularly some of the early columns by each, since those are the ones that typically discuss the initial part of the journey. You'd be surprised at how many people post responses indicating how much they relate to what's been written and find comfort in knowing they're not alone in what they're going through.
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Kevin J - Name: Kevin J
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: Jan 2011
- Age at diagnosis: 52
Re: New member
It is very helpful to hear other people going through similar experiences. I especially like to hear that many people have good years ahead. Grieving hits me a lot. I see my grandchildren or a beautiful day and I am not ready to leave this world yet. I have another grandchild due in January. But then, I try to remember that this is one step at a time and I am still alive and I may have more good years.
This weekend the steroids must have kicked in because my face, hands, and feet swelled up. Ugh. What a unpleasant shock to look in the mirror and see Marlon Brando cheeks. But, my daughter told me to hold my head high and smile and no one would notice. So, I am holding my head high and smiling at everyone in the grocery store.
This weekend the steroids must have kicked in because my face, hands, and feet swelled up. Ugh. What a unpleasant shock to look in the mirror and see Marlon Brando cheeks. But, my daughter told me to hold my head high and smile and no one would notice. So, I am holding my head high and smiling at everyone in the grocery store.
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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: New member
Hi Cathy,
Yes, I also had a lot of puffy face with the dex, as well as some psychotic moments. I had to stay for 3 weeks in the hospital when diagnosed, so a good thing I was already there.
If problems persist, your doctor will reduce your dex amount. My dose was eventually reduced down to 10 mg.
I loved the Velcade!! I probably received a better than average result from my treatments. On my week off, I would feel as though I had been transported back in time 6 months. I had the usual side effects, but they were worth it. My bone pain disappeared after 3 cycles.
I also was a Stage 3 patient. I have one vertebra that fractured and minimal bone loss to two other vertebra caused by a tumor at the tailbone level. I was diagnosed in late June 2010. I went home from the hospital on a walker with a large back brace and had to use a hospital bed for my first month at home. You would never guess I had been in such a sad state if you were to see me today. My photo here includes the back brace (my turtle shell), which I wore for 10 months. I did whatever I was instructed, and I now have no impairments.
The best recoveries are received by patients who receive top notch medical care and have a strong spiritual connection. Please keep this in mind while you complete your treatments. I had no issues with my kidneys, so I cannot help you with all of those bumps in the road. From what I have read, however, your kidney function will improve when the myeloma is brought under control.
We should all have a big sign, "All of this is only temporary." Listen to your doctors and take good care of yourself. For the next year or so, it has to be ALL ABOUT YOU.
Take good care of yourself and learn to go with the flow while you are on your journey to recovery.
Yes, I also had a lot of puffy face with the dex, as well as some psychotic moments. I had to stay for 3 weeks in the hospital when diagnosed, so a good thing I was already there.
If problems persist, your doctor will reduce your dex amount. My dose was eventually reduced down to 10 mg.I loved the Velcade!! I probably received a better than average result from my treatments. On my week off, I would feel as though I had been transported back in time 6 months. I had the usual side effects, but they were worth it. My bone pain disappeared after 3 cycles.
I also was a Stage 3 patient. I have one vertebra that fractured and minimal bone loss to two other vertebra caused by a tumor at the tailbone level. I was diagnosed in late June 2010. I went home from the hospital on a walker with a large back brace and had to use a hospital bed for my first month at home. You would never guess I had been in such a sad state if you were to see me today. My photo here includes the back brace (my turtle shell), which I wore for 10 months. I did whatever I was instructed, and I now have no impairments.
The best recoveries are received by patients who receive top notch medical care and have a strong spiritual connection. Please keep this in mind while you complete your treatments. I had no issues with my kidneys, so I cannot help you with all of those bumps in the road. From what I have read, however, your kidney function will improve when the myeloma is brought under control.
We should all have a big sign, "All of this is only temporary." Listen to your doctors and take good care of yourself. For the next year or so, it has to be ALL ABOUT YOU.
Take good care of yourself and learn to go with the flow while you are on your journey to recovery.-
Marcia - Name: Marcia K
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: July 2010
- Age at diagnosis: 55
Re: New member
How encouraging, Marcia! Your experince definitely gives me hope.
I am trying to keep my focus on the amazing breakthrough of stem cell replacement. That wasn't available just a few years ago.
I am also doing everything I can to help my kidneys because they are not improving yet. I had brown urine and got checked Thursday and it was blood. They did blood work 3 time last week and my creatinine is still 2.0 and glucose high and sodium low. I am eating "renal" diet, walking and swimming 30 minutes per day, drinking lots of water. I'm going to avoid all diet soda this week and see if that helps. I'm meeting my oncologist Thursday with more blood work first.
I took off my wedding ring and my hubby will cut off another ring because I am so swollen. I might have to buy bigger clothes - I'm not eating more, but even my knees are swollen. I might rather people think I'm gaining weight than ask why I am so puffy. Telling people I have cancer is very hard. (Any tips on that?)
I had a nice prayer time this weekend. This is making me more compassionate for so many people. I look at old people or handicapped people and really see them Also it makes you Think of what is really important in life.
I am trying to keep my focus on the amazing breakthrough of stem cell replacement. That wasn't available just a few years ago.
I am also doing everything I can to help my kidneys because they are not improving yet. I had brown urine and got checked Thursday and it was blood. They did blood work 3 time last week and my creatinine is still 2.0 and glucose high and sodium low. I am eating "renal" diet, walking and swimming 30 minutes per day, drinking lots of water. I'm going to avoid all diet soda this week and see if that helps. I'm meeting my oncologist Thursday with more blood work first.
I took off my wedding ring and my hubby will cut off another ring because I am so swollen. I might have to buy bigger clothes - I'm not eating more, but even my knees are swollen. I might rather people think I'm gaining weight than ask why I am so puffy. Telling people I have cancer is very hard. (Any tips on that?)
I had a nice prayer time this weekend. This is making me more compassionate for so many people. I look at old people or handicapped people and really see them Also it makes you Think of what is really important in life.
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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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