Greetings everyone,
What an interesting few weeks I have had. I went to my annual checkup with my primary care physician and was pleasantly surprised that he now offered 'in office' blood draws for lab work. I must admit that I loathe going to the Quest labs for getting blood drawn and have in the last few years taken the lab slip and never followed up. Being 50, I thought the worst thing I had in store for me this year was my first colonoscopy. Boy was I wrong!
So, long story short, I get a call back from my doctor that I have some anemia and protein in my blood. Of course, a quick Internet search with those two terms does not come back with a bunch of options... In fact, it really only returns two: MGUS and multiple myeloma. He referred me to a hematology-oncology specialist and within a week I had my first appointment on a Friday with full blood pulls and a skeletal survey. The following week the initial labs were confirmed and I had a bone marrow biopsy and aspiration on Wednesday, and by Friday I received the dreaded call: You've got multiple myeloma. I started induction therapy the next Tuesday. I am on Velcade, dexamethasone, and Revlimid now and today will be my 4th infusion of Velcade (I go twice a week, Tuesday and Friday, for the infusion) and last night started my Revlimid.
I am still learning the lingo and meaning of the stats but I understand I have 70% in my bone marrow, I have the IgG levels at 5400 or so. My blood protein level is at 9.6 and don't have the two really bad markers from the FISH test. But for some minor problems with fracturing my ribs over the past few years, I can honestly say I don't have much in the way of symptoms. My organs are all good, I have no issues with my bones so far, and feel fortunate that I actually had my blood work done at my annual or things may have gone on undetected until a really bad symptom emerged. I had been 'running' about 3.3 miles a few times a week, but could never get under a 10:30 minute mile, so that was probably why with the anemia.
As of my visit today, I am 'Stage I with Bone' on the ISS scale, for what that is worth.
Anyway, I'm only three weeks into this whole life-changing disease, but I have a positive outlook and am strongly encouraged by the stories I read on this forum! I am supposed to do this initial course for eight weeks, and I know at some point I will have the stem cell transplant. I am fortunate that we have a surprising number of myeloma patients in Tallahassee and my oncologist is very familiar with the disease and the most up-to-date treatment protocols. I cannot get my stem cell stuff done here, though, so I am researching the locations.
I realize this is a bit rambling but I thought I should get something out there. I look forward to reading and sharing as I journey though this adventure with all of you!
Doug
Forums
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dbsmithiii - Name: Doug
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Sept 15, 2017
- Age at diagnosis: 50
Re: 50 and newly diagnosed with multiple myeloma
Hi Doug,
May I welcome you to a fantastic forum that no one wants to join!
I was diagnosed on my 66th birthday, in June 2017, so I'm slightly ahead of you. I too was placed on the Revlimid, Velcade, and dexamethasone (RVD) regimen, and three weeks later my bad numbers plummeted dramatically! However, I had a bad rash reaction to the Revlimid at the start of Cycle 2 and was taken off.
Since then, my numbers have only moved slowly, but my oncologist says I'm doing well. It's disappointing, but she has a big bag of tricks to try, I'm sure.
If you can stay on the RVD treatment, I predict you will have great results.
Like you, I had no bone issues, which is huge. I'm getting Zometa for that. Kidneys are good, also. In fact, the only pesky issue for me is low white blood / red blood / neutrophil counts, but no illnesses so far. I'm very careful but not paranoid.
I will watch for your postings to see how you are doing. I would expect you to zoom past me with your treatments and be ready for transplant long before me.
This forum is supported by an incredible group of folks dealing with multiple myeloma, and I'm sure you will be a valuable addition (sorry nonetheless).
May I welcome you to a fantastic forum that no one wants to join!
I was diagnosed on my 66th birthday, in June 2017, so I'm slightly ahead of you. I too was placed on the Revlimid, Velcade, and dexamethasone (RVD) regimen, and three weeks later my bad numbers plummeted dramatically! However, I had a bad rash reaction to the Revlimid at the start of Cycle 2 and was taken off.
Since then, my numbers have only moved slowly, but my oncologist says I'm doing well. It's disappointing, but she has a big bag of tricks to try, I'm sure.
If you can stay on the RVD treatment, I predict you will have great results.
Like you, I had no bone issues, which is huge. I'm getting Zometa for that. Kidneys are good, also. In fact, the only pesky issue for me is low white blood / red blood / neutrophil counts, but no illnesses so far. I'm very careful but not paranoid.
I will watch for your postings to see how you are doing. I would expect you to zoom past me with your treatments and be ready for transplant long before me.
This forum is supported by an incredible group of folks dealing with multiple myeloma, and I'm sure you will be a valuable addition (sorry nonetheless).
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Pepperink - Name: Jimmie
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: June 16, 2017
- Age at diagnosis: 66
Re: 50 and newly diagnosed with multiple myeloma
Hi Pepperink!
Thank you for your warm welcome and kind reply. I hope that I am able to tolerate the medications and will be able to get to the state where I can accomplish the transplant soon. I have also learned so much from reading the posts on this board, and as I progress I intend to share my experiences as well.
I hope you too are progressing well and I will look forward to reading your progress!
Doug
Thank you for your warm welcome and kind reply. I hope that I am able to tolerate the medications and will be able to get to the state where I can accomplish the transplant soon. I have also learned so much from reading the posts on this board, and as I progress I intend to share my experiences as well.
I hope you too are progressing well and I will look forward to reading your progress!
Doug
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dbsmithiii - Name: Doug
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Sept 15, 2017
- Age at diagnosis: 50
Re: 50 and newly diagnosed with multiple myeloma
Welcome aboard, Doug. Although, let me echo Pepperink and say as well that I wish you had not needed to join the rest of us here!
But it is a good place to be if you have drawn a short straw in the “do I have multiple myeloma” gambit.
The really good news is that your primary care doctor caught it before it started wrecking your body. Many of us – me included – were not so fortunate and wound up with bone damage and/or kidney damage, etc. Much harder to deal with then.
Good luck, Doug. There are now many effective treatments and even more on the horizon. You were not dealt the best of hands, to be sure, but it could have been much, much worse!
But it is a good place to be if you have drawn a short straw in the “do I have multiple myeloma” gambit.
The really good news is that your primary care doctor caught it before it started wrecking your body. Many of us – me included – were not so fortunate and wound up with bone damage and/or kidney damage, etc. Much harder to deal with then.
Good luck, Doug. There are now many effective treatments and even more on the horizon. You were not dealt the best of hands, to be sure, but it could have been much, much worse!
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MrPotatohead - Name: MrPotatohead
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: March, 2015
- Age at diagnosis: 65
Re: 50 and newly diagnosed with multiple myeloma
Hello Doug.
I am sorry that you have to join this forum at a relatively young age, at least compared to me. I was already 67+ when my multiple myeloma was diagnosed, almost the same way as yours was; by the routine urine and blood tests.
My myeloma was detected because of a fairly sudden increase in the protein in the urine because of my 'light chains only' myeloma. My kappa light chains were escaping through the kidneys into the urine. I was very fortunate that this diagnosis was made quite in the early stage and I think I was a 'borderline' case to start the induction therapy. Most of the annual checkups apparently do not do the urine testing, but fortunately my PCP is trained in the 'old school' way and had ordered that test. I had been doing so well in my annual checkups and I didn't have a routine checkup for almost 4 or 5 years prior to asking my PCP about it. I did have a urine test done for a life insurance policy in 2012 and there wasn't even a trace of protein in the urine at the time.
I have not opted for a transplant, at least so far. Mine is a standard risk IgG kappa multiple myeloma with normal cytogenetics and I responded very well to the same induction therapy you are undergoing. I hope you have similar success. I am also doing quite well with just the Revlimid maintenance. I am tolerating the Revlimid quite well, too. The incessant diarrhea and the insomnia are my worst problems and I am trying to manage those, too.
This Thanksgiving will be my 3rd Anniversary of my myeloma diagnosis, though my induction therapy started on December 17, 2014. My skeletal x-rays show only spotty lesions and none have formed any rings around the long bones and they must not be too dangerous because I have been cleared to play golf and also I do not need to take any Zometa shots.
This forum has helped me get a lot of practical advice that many hematologist / oncologists often don't know about; like the "bubble technique" to avoid rash from the Velcade shots, Benadryl (diphenhydramine) for insomnia, etc. and recently the cholestyramine for the Revlimid diarrhea, which in my case got very severe after about 2 1/2 years of Revlimid.
Please post your progress soon. Hopefully your IgG and the overall blood protein come close to normal after just a few Revlimid, Velcade, and dexamethasone (RVD) cycles.
Also be very careful and avoid any and all infections. Our immune system is quite compromised and I had a setback during my induction phase because of a flu-like high fever. I was advised NOT to take any Tylenol (acetaminophen / paracetamol) or aspirin for the fever but to go to the emergency room. Fortunately my fever came down after the emergency room treatment but I had to stop the RVD for a while and all in all it took two months to get back on track.
I am sorry that you have to join this forum at a relatively young age, at least compared to me. I was already 67+ when my multiple myeloma was diagnosed, almost the same way as yours was; by the routine urine and blood tests.
My myeloma was detected because of a fairly sudden increase in the protein in the urine because of my 'light chains only' myeloma. My kappa light chains were escaping through the kidneys into the urine. I was very fortunate that this diagnosis was made quite in the early stage and I think I was a 'borderline' case to start the induction therapy. Most of the annual checkups apparently do not do the urine testing, but fortunately my PCP is trained in the 'old school' way and had ordered that test. I had been doing so well in my annual checkups and I didn't have a routine checkup for almost 4 or 5 years prior to asking my PCP about it. I did have a urine test done for a life insurance policy in 2012 and there wasn't even a trace of protein in the urine at the time.
I have not opted for a transplant, at least so far. Mine is a standard risk IgG kappa multiple myeloma with normal cytogenetics and I responded very well to the same induction therapy you are undergoing. I hope you have similar success. I am also doing quite well with just the Revlimid maintenance. I am tolerating the Revlimid quite well, too. The incessant diarrhea and the insomnia are my worst problems and I am trying to manage those, too.
This Thanksgiving will be my 3rd Anniversary of my myeloma diagnosis, though my induction therapy started on December 17, 2014. My skeletal x-rays show only spotty lesions and none have formed any rings around the long bones and they must not be too dangerous because I have been cleared to play golf and also I do not need to take any Zometa shots.
This forum has helped me get a lot of practical advice that many hematologist / oncologists often don't know about; like the "bubble technique" to avoid rash from the Velcade shots, Benadryl (diphenhydramine) for insomnia, etc. and recently the cholestyramine for the Revlimid diarrhea, which in my case got very severe after about 2 1/2 years of Revlimid.
Please post your progress soon. Hopefully your IgG and the overall blood protein come close to normal after just a few Revlimid, Velcade, and dexamethasone (RVD) cycles.
Also be very careful and avoid any and all infections. Our immune system is quite compromised and I had a setback during my induction phase because of a flu-like high fever. I was advised NOT to take any Tylenol (acetaminophen / paracetamol) or aspirin for the fever but to go to the emergency room. Fortunately my fever came down after the emergency room treatment but I had to stop the RVD for a while and all in all it took two months to get back on track.
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K_Shash - Name: K_Shash
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: November 2014
- Age at diagnosis: 67
Re: 50 and newly diagnosed with multiple myeloma
Hi Mr PotatoHead and K_Shash,
Thank you for your replies, words of encouragement, and informative posts! I feel as if I am drinking from the fire hose of information at times, and I have found the real life experiences of people like you to be just as important (and quite frankly a bit more 'real') than the antiseptic scripting of the medical and pharmacological websites. Next Friday my oncologist has scheduled a PET scan with NaF-18, which he tells me is much more sensitive to finding bone issues than the standard full body x-rays I have already completed. I hope (and expect) that they will come back ok, but I am glad he is being so thorough with the diagnostics. I also feel incredibly fortunate that I have good health insurance. I work in state government for Florida and while the pay is not great, the benefits are outstanding. I can't imagine what it must be like for someone to have to face this disease without it.
I hope you guys have a wonderful weekend and I will be sure to check in often and update when events warrant. Thank you again!
Doug
Thank you for your replies, words of encouragement, and informative posts! I feel as if I am drinking from the fire hose of information at times, and I have found the real life experiences of people like you to be just as important (and quite frankly a bit more 'real') than the antiseptic scripting of the medical and pharmacological websites. Next Friday my oncologist has scheduled a PET scan with NaF-18, which he tells me is much more sensitive to finding bone issues than the standard full body x-rays I have already completed. I hope (and expect) that they will come back ok, but I am glad he is being so thorough with the diagnostics. I also feel incredibly fortunate that I have good health insurance. I work in state government for Florida and while the pay is not great, the benefits are outstanding. I can't imagine what it must be like for someone to have to face this disease without it.
I hope you guys have a wonderful weekend and I will be sure to check in often and update when events warrant. Thank you again!
Doug
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dbsmithiii - Name: Doug
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Sept 15, 2017
- Age at diagnosis: 50
Re: 50 and newly diagnosed with multiple myeloma
Doug-
Welcome and hopefully you will do well with treatment and possible transplant in the future.
I have a couple of questions/comments about what you stated in your introduction.
One, you said that you are getting infusions of Velcade twice per week. Is there a reason for infusion rather than subcutaneous injection of Velcade? And, is there a reason for twice per week? The most common Velcade protocol right now is subcutaneous injection one time per week.
You also said that you didn't have any bone involvement. But, then you mentioned that you had had rib fractures in the past few years. This could very likely be fractures from your undiagnosed myeloma. If, with the PET scan, there is evidence of bone involvement including the healed rib fractures, you should probably be getting a bisphosphonate infusion for your bones (Aredia or Zometa) on a regular basis.
The other thing that I would suggest is that you get a second opinion with a myeloma specialist, if you have not already. This is a hematologist/oncologist who treats and researches mainly myeloma. A myeloma specialist can work with your local oncologist coordinating care with him / her.
All the best to you as you begin this new phase of your life,
Nancy in Phila
Welcome and hopefully you will do well with treatment and possible transplant in the future.
I have a couple of questions/comments about what you stated in your introduction.
One, you said that you are getting infusions of Velcade twice per week. Is there a reason for infusion rather than subcutaneous injection of Velcade? And, is there a reason for twice per week? The most common Velcade protocol right now is subcutaneous injection one time per week.
You also said that you didn't have any bone involvement. But, then you mentioned that you had had rib fractures in the past few years. This could very likely be fractures from your undiagnosed myeloma. If, with the PET scan, there is evidence of bone involvement including the healed rib fractures, you should probably be getting a bisphosphonate infusion for your bones (Aredia or Zometa) on a regular basis.
The other thing that I would suggest is that you get a second opinion with a myeloma specialist, if you have not already. This is a hematologist/oncologist who treats and researches mainly myeloma. A myeloma specialist can work with your local oncologist coordinating care with him / her.
All the best to you as you begin this new phase of your life,
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: 50 and newly diagnosed with multiple myeloma
Hi Doug,
My husband was 48 when he was diagnosed 2 years ago. It was quite a shock. This forum has truly saved my sanity as there was / is so much worry regarding stem cell transplants. My husband had an autologous stem cell transplant (using his own cells) at Moffitt Cancer Center in Tampa. He did this as an outpatient. Moffitt worked well with our local hematologist-oncologist.
Not to overwhelm, but given your age, they probably will also recommend outpatient. You will be there from 4 - 6 weeks. You will need a dedicated caregiver (family member, etc.) They will also want you to have a back-up in the case your caregiver gets sick, as you can't be around sick people when recovering. They will have to be "trained" and go to a couple hour class at Moffitt. If you don't have that, perhaps they will let you do inpatient. There are certain facilities on an approved list by Moffitt for you to stay in. There is more to know, but I know you may be preparing for what is next and I wanted to give you some basics to start thinking about. If you lived within a certain mileage of Moffitt, they would let you do outpatient in your home.
I don't know of any facilities in Tallahassee area. Mayo is in Jacksonville. I am guessing they do stem cell transplants. Moffitt really does have a specialty in the process.
There are tons of posts on people's experiences (see, for example, the list of transplant experience threads at the end of this post). Overall, my husband got through it ok. He was tired for much longer after we returned home than I thought he would be, especially for his age.
My husband was 48 when he was diagnosed 2 years ago. It was quite a shock. This forum has truly saved my sanity as there was / is so much worry regarding stem cell transplants. My husband had an autologous stem cell transplant (using his own cells) at Moffitt Cancer Center in Tampa. He did this as an outpatient. Moffitt worked well with our local hematologist-oncologist.
Not to overwhelm, but given your age, they probably will also recommend outpatient. You will be there from 4 - 6 weeks. You will need a dedicated caregiver (family member, etc.) They will also want you to have a back-up in the case your caregiver gets sick, as you can't be around sick people when recovering. They will have to be "trained" and go to a couple hour class at Moffitt. If you don't have that, perhaps they will let you do inpatient. There are certain facilities on an approved list by Moffitt for you to stay in. There is more to know, but I know you may be preparing for what is next and I wanted to give you some basics to start thinking about. If you lived within a certain mileage of Moffitt, they would let you do outpatient in your home.
I don't know of any facilities in Tallahassee area. Mayo is in Jacksonville. I am guessing they do stem cell transplants. Moffitt really does have a specialty in the process.
There are tons of posts on people's experiences (see, for example, the list of transplant experience threads at the end of this post). Overall, my husband got through it ok. He was tired for much longer after we returned home than I thought he would be, especially for his age.
Re: 50 and newly diagnosed with multiple myeloma
Hi Nancy and Lrankin,
Thank you both for your replies. To address Nancy's questions, I am unsure why the twice-a-week, but the good news is I get to start subcutaneous next week. My doctor was also including other stuff like anti-nausea in the drips at first and was seeing how I tolerated things before moving to the shot. Most of the other patients getting Velcade come once a week for the shot and they get in and out much faster that way. My doctor was also concerned that the ribs are related, so that is why I had the PET scan on Friday. I don't have the results yet, but he indicates as you have that we would do something for the bones if something shows up.
Tallahassee of course does not have a stem cell transplant capability, so I have looked around at the options nearby. Lrankin - Many patients here have gone to Moffit and some to Shands, but I will probably be going up to Emory in Atlanta as they have a myeloma program and transplant facility and I have more support options to assist me. Moffitt and Emory are both about 4.5 hours from here, so it really came down to the convenience of those who can help me as well (many of my family members are from the North, so it is less travel for them). I hope your husband is doing well and I am always glad to hear about other multiple myelomapatients similar to me. Thank you so much for sharing!
I expect that it will be a long process and I have already accepted that I will be down for a lot longer than I want to be, but as I have come to read from others on this forum that multiple myeloma makes that a part of your life.
Today I woke up with a rash covering my back and sides, presumably from one or more of the drugs. It doesn't itch but it is very unsightly. I hope it goes away soon.
Again thank you both, and I will check in again soon,
Doug
Thank you both for your replies. To address Nancy's questions, I am unsure why the twice-a-week, but the good news is I get to start subcutaneous next week. My doctor was also including other stuff like anti-nausea in the drips at first and was seeing how I tolerated things before moving to the shot. Most of the other patients getting Velcade come once a week for the shot and they get in and out much faster that way. My doctor was also concerned that the ribs are related, so that is why I had the PET scan on Friday. I don't have the results yet, but he indicates as you have that we would do something for the bones if something shows up.
Tallahassee of course does not have a stem cell transplant capability, so I have looked around at the options nearby. Lrankin - Many patients here have gone to Moffit and some to Shands, but I will probably be going up to Emory in Atlanta as they have a myeloma program and transplant facility and I have more support options to assist me. Moffitt and Emory are both about 4.5 hours from here, so it really came down to the convenience of those who can help me as well (many of my family members are from the North, so it is less travel for them). I hope your husband is doing well and I am always glad to hear about other multiple myelomapatients similar to me. Thank you so much for sharing!
I expect that it will be a long process and I have already accepted that I will be down for a lot longer than I want to be, but as I have come to read from others on this forum that multiple myeloma makes that a part of your life.
Today I woke up with a rash covering my back and sides, presumably from one or more of the drugs. It doesn't itch but it is very unsightly. I hope it goes away soon.
Again thank you both, and I will check in again soon,
Doug
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dbsmithiii - Name: Doug
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Sept 15, 2017
- Age at diagnosis: 50
Re: 50 and newly diagnosed with multiple myeloma
Quick update:
As expected, the PET scan did show some activity in my ribs and "scattered small areas of lucency throughout the pelvis bilaterally". So yesterday I started on Zometa as well. The other good news is my M-spike is way down to 1.4 g/dL (14 g/l), so it appears I am responding well to treatment. The only area of concern was that my creatinine levels are slightly elevated, which they attribute to my kidneys efforts to clear out all of the proteins. The rash is still there and looks awful but is not painful or itchy. Now if I could just get this out-of-control weight gain stabilized I would be a happy camper. Dex is not my friend!
Doug
As expected, the PET scan did show some activity in my ribs and "scattered small areas of lucency throughout the pelvis bilaterally". So yesterday I started on Zometa as well. The other good news is my M-spike is way down to 1.4 g/dL (14 g/l), so it appears I am responding well to treatment. The only area of concern was that my creatinine levels are slightly elevated, which they attribute to my kidneys efforts to clear out all of the proteins. The rash is still there and looks awful but is not painful or itchy. Now if I could just get this out-of-control weight gain stabilized I would be a happy camper. Dex is not my friend!
Doug
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dbsmithiii - Name: Doug
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Sept 15, 2017
- Age at diagnosis: 50
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