Today was the day -- our first visit to oncologist. As I stated in an earlier post, my husband was diagnosed by his internist last Monday the 15th of September, possibly multiple myeloma.
Today was extremely informative, but also very confusing. I told him that I had been on this forum and he actually said it was a good one. Our doctor reassured us that we would learn all the terminology we needed!
Okay, let me try to explain one aspect of our visit. He explained, "CRABS". He said my husband's calcium was good. R is for kidneys, which led my husbands internist to look into this, but my husband has always had problems with his kidneys since he was a child and the doctor said his count from that had improved from August to September.
Anemia - he said my husband was not anemic, his white and red blood count was perfect. They did find some small Bone lesions. He described them as very small, on his arms between his wrist and elbows, but no where else in body. And S for symptoms, which he has none except for the kidney problem.
Phewwwwww.
The doctor said that my husband may have had this for decades without knowing it, smoldering I assume. Now let me explain. My husband has always gone to the doctor and just recently in February of this year had total knee replacement.
A bone marrow biopsy is planned for October 1st with additional blood work and then a follow up on October 22nd for a plan. As he explained, if it is smoldering or stage 1, he may just need to be monitored.
Please excuse if I have made any medical errors here. These last two weeks have been unbelievably stressful for me. As I told my husband, I have kissed way too many frogs to let him go now!!
Hugs to all and thank you for listening.
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Re: Results of first oncologist visit
Awwww.... Mildred, what a relief to know it's not the "worst", right? And I know what you mean about having kissed too many frogs to lose your one and only after you've finally found him.
The bone marrow biopsy will provide a lot of information to the doctors, so they will be able to give you good direction. The fact that your husband is mostly asymptomatic (except for possibly the bone lesions) is a sign in the right direction too.
I know you've been terribly worried, and who isn't when we first get the phone call? But with every step you take, you will be able to understand and see more clearly.
Wishing for all the best for you and your husband!
The bone marrow biopsy will provide a lot of information to the doctors, so they will be able to give you good direction. The fact that your husband is mostly asymptomatic (except for possibly the bone lesions) is a sign in the right direction too.
I know you've been terribly worried, and who isn't when we first get the phone call? But with every step you take, you will be able to understand and see more clearly.
Wishing for all the best for you and your husband!
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Toni - Name: Toni
- Who do you know with myeloma?: self - MGUS
- When were you/they diagnosed?: April 2014
- Age at diagnosis: 51
Re: Results of first oncologist visit
Mildred,
I am jumping in here since I am just a little ahead of you guys (a couple of months) and thought my experiences so far might give you something to go by. Of course, no case is typical, but here goes.
About 3 and 1/2 years ago, I had 25 radiation treatments for a plasmacytoma in a rib. Around that time, I lost a kidney due to an unrelated illness. I have been monitored by a hemo doc since the earlier cancer and just recently my protein stated to rise, so she ordered a bone marrow biopsy (BMB). I feared that procedure, since I had heard nothing good about it, but it was a cakewalk. Not being a hero, I took She Who Must Be Obeyed with me to Barnes Hospital in St Louis to help me, if needed, and, since I am a chicken, I opted for the sedative. I didn't get to ride the Big White Horse but the shot put me in la la for a bit and the pain was no more that an ouch! Then they were done.
(Showing off for the Woman, I pulled on my pants, stood up, and walked straight into the wall. Realizing there was no big red "S" on my shirt, I let her take me to the car in a wheel chair. I was a bit sore for a couple of days but that is all.)
My BMB showed about 30% plasma cells, so doc ordered skeletal survey and they found bone damage on both upper arms and both upper legs. I just completed 1 cycle of Revlimid, dex, and Velcade. Plus a monthly IV of Zometa. Saw the doc today after treatment and she said slight anemia but not enough to worry about. Other blood work looked good with all levels improved from a month ago. Still waiting for complete protein lab results, but overall protein level has dropped a bit already. Kidney function has improved also.
Side effects of the drugs I am getting are a bit of a bother at times buy nothing devastating. I did have a sore mouth for a few days but that got better on it's own. Developed severe heartburn and reflux with a "fire in my belly", but doc ordered Nexium and I got immediate relief from that. Worst worry so far has been ping ponging between constipation and the other extreme but between Imodium for one and whatever it takes for the other, I am managing ok and the problem seems to be leveling out. Still have to stay close to the house some days but the anti-diarrheal kicks in and I am OK. Not everyone gets that, I am told, but I take mycophenolate for another ailment and it does loosen up many of those who use it.
Nausea sneaks up on me from time to time in a wave, but it is soon gone. Blood sugar seems to go through the roof for a day or so after my big weekly dose of dex, but I have pills to control that. Something makes me hyper for a day after treatment, I bounce off the walls, then I sleep a lot afterward. Steroid or Velcade?
My take on this for now. Why am I going through all this crap when I was feeling fine to begin with? I know it is necessary to prevent worse problems in the future, but it just doesn't seem right. Like how the tooth stops hurting after you get the dentist appointment.
Doc said might be looking at about 6 months of this treatment and then consider a stem cell transplant (SCT). I am not ready to get on that wagon yet. I will be 68 years old by then and only have one kidney and two stents in my ticker. Have to see what comes one day at a time.
Cost of this treatment would gag a maggot but after Medicare Part D and a couple of generous grants for which I qualified, I am not doing too bad for an old guy on Railroad Retirement.
Now for a bit of preaching- Get your husband to the biggest, busiest, cancer care and treatment center you can find. Forget "podunk" hospitals and doctors. I go to Siteman Cancer Center at Barnes in St Louis. They treat about 150 chemo patients each day. If I bring up something that the person I am talking with cannot answer, they always know who can.
I have said all this predicated on the BMB showing that treatment is needed. We can all hope for a miracle, but even though God hears all prayers, I don't think they all get answered right away. I am only just now completing my 1st month of treatment and I know things could change, but, for now, I will tell you, I feared this chemo experience would be an 8 or 9 on a 1-10 scale, and it has come in more like a 2 or 3. We will just have to wait and see.
I am getting off about the easiest of anyone I know of so far that has this curse. Today, I was the last guy into the treatment pod to which I was assigned and I was the first one out. The other 5 were still there when I left. One lady had her IV interrupted because it was burning her so badly and another was still scheduled for 4 more hours on the drip. I got a pill, a 30-minute wait for it to kick in, and then a quick shot of Velcade in the belly, and I was out of there in less that an hour.
Different cancers get different treatments. If your husband must go through this, I hope he has luck like mine.
Keep us posted.
All the best.
Charlie (grouch German)
I am jumping in here since I am just a little ahead of you guys (a couple of months) and thought my experiences so far might give you something to go by. Of course, no case is typical, but here goes.
About 3 and 1/2 years ago, I had 25 radiation treatments for a plasmacytoma in a rib. Around that time, I lost a kidney due to an unrelated illness. I have been monitored by a hemo doc since the earlier cancer and just recently my protein stated to rise, so she ordered a bone marrow biopsy (BMB). I feared that procedure, since I had heard nothing good about it, but it was a cakewalk. Not being a hero, I took She Who Must Be Obeyed with me to Barnes Hospital in St Louis to help me, if needed, and, since I am a chicken, I opted for the sedative. I didn't get to ride the Big White Horse but the shot put me in la la for a bit and the pain was no more that an ouch! Then they were done.
(Showing off for the Woman, I pulled on my pants, stood up, and walked straight into the wall. Realizing there was no big red "S" on my shirt, I let her take me to the car in a wheel chair. I was a bit sore for a couple of days but that is all.)
My BMB showed about 30% plasma cells, so doc ordered skeletal survey and they found bone damage on both upper arms and both upper legs. I just completed 1 cycle of Revlimid, dex, and Velcade. Plus a monthly IV of Zometa. Saw the doc today after treatment and she said slight anemia but not enough to worry about. Other blood work looked good with all levels improved from a month ago. Still waiting for complete protein lab results, but overall protein level has dropped a bit already. Kidney function has improved also.
Side effects of the drugs I am getting are a bit of a bother at times buy nothing devastating. I did have a sore mouth for a few days but that got better on it's own. Developed severe heartburn and reflux with a "fire in my belly", but doc ordered Nexium and I got immediate relief from that. Worst worry so far has been ping ponging between constipation and the other extreme but between Imodium for one and whatever it takes for the other, I am managing ok and the problem seems to be leveling out. Still have to stay close to the house some days but the anti-diarrheal kicks in and I am OK. Not everyone gets that, I am told, but I take mycophenolate for another ailment and it does loosen up many of those who use it.
Nausea sneaks up on me from time to time in a wave, but it is soon gone. Blood sugar seems to go through the roof for a day or so after my big weekly dose of dex, but I have pills to control that. Something makes me hyper for a day after treatment, I bounce off the walls, then I sleep a lot afterward. Steroid or Velcade?
My take on this for now. Why am I going through all this crap when I was feeling fine to begin with? I know it is necessary to prevent worse problems in the future, but it just doesn't seem right. Like how the tooth stops hurting after you get the dentist appointment.
Doc said might be looking at about 6 months of this treatment and then consider a stem cell transplant (SCT). I am not ready to get on that wagon yet. I will be 68 years old by then and only have one kidney and two stents in my ticker. Have to see what comes one day at a time.
Cost of this treatment would gag a maggot but after Medicare Part D and a couple of generous grants for which I qualified, I am not doing too bad for an old guy on Railroad Retirement.
Now for a bit of preaching- Get your husband to the biggest, busiest, cancer care and treatment center you can find. Forget "podunk" hospitals and doctors. I go to Siteman Cancer Center at Barnes in St Louis. They treat about 150 chemo patients each day. If I bring up something that the person I am talking with cannot answer, they always know who can.
I have said all this predicated on the BMB showing that treatment is needed. We can all hope for a miracle, but even though God hears all prayers, I don't think they all get answered right away. I am only just now completing my 1st month of treatment and I know things could change, but, for now, I will tell you, I feared this chemo experience would be an 8 or 9 on a 1-10 scale, and it has come in more like a 2 or 3. We will just have to wait and see.
I am getting off about the easiest of anyone I know of so far that has this curse. Today, I was the last guy into the treatment pod to which I was assigned and I was the first one out. The other 5 were still there when I left. One lady had her IV interrupted because it was burning her so badly and another was still scheduled for 4 more hours on the drip. I got a pill, a 30-minute wait for it to kick in, and then a quick shot of Velcade in the belly, and I was out of there in less that an hour.
Different cancers get different treatments. If your husband must go through this, I hope he has luck like mine.
Keep us posted.
All the best.
Charlie (grouch German)
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Grizlump - Name: Charlie
- Who do you know with myeloma?: me
- When were you/they diagnosed?: June 2014
- Age at diagnosis: 67
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• Page 1 of 1