I will 'try' to do a quick up to speed post to start this one concerning starting my treatment process.
MGUS diagnosis in Oct of 2014, caught by regular PCP in a routine cholesterol checkup due to high protein level in my blood. He wasted no time referring me.
Was given the full battery of testing to start with, with the outcome being put on a every-4-months watch agenda. My isotype is IgG lambda. Due to constant increase in those test results, I received a PET scan in June 2015 which still showed clean – no bone or other body involvement. Still at MGUS stage.
As I moved through 2016, things progressed even more to where kidney involvement was imminent. The final 4 months of 2016 I was being tested every 6-8 weeks, still showing progression and now at smoldering stage.
In January of this year (2017) I was referred to a stem cell transplant specialist. She reviewed my progression of results and agreed that I was in smoldering stage but not to a point of transplant recommendation. (Fine by me, I do not want a transplant unless it is my LAST resort or unless it is a cure.)
In February. I was given the full battery of tests again, including the PET scan. Bone survey showed nothing abnormal, PET scan showed a glow in my left side eighth rib. It seems I now have some slight bone involvement at one spot. Bone marrow biopsy showed 20% involvement in my plasma cells and being determined that it is progressing toward indolent myeloma.
It was agreed by both me and my husband with the doctor that it was time to start doing treatment. I myself did not want to wait any longer for my kidney's to take a bigger hit with this stuff and be damaged beyond their own healing process. My kidneys were starting to work harder to try to keep this stuff filtering. My Bence Jones protein test was constantly showing a steady increase in the urine, my lambda light chains and the IgG was still constantly rising more and more each time – they were on a constant increase. My M-spike is just above 2.0 g/dL (20 g/l).
Now for the treatment:
I have just finished round 1 of treatment, consisting of Velcade subcutaneous shots in the stomach area at 2.75 mg along with dexamethasone (Decadron) 5 pills for 20 mg / treatment. Treatments are given 2 times a week for 2 weeks with a 10 day break between rounds. Currently scheduled for 5 more rounds.
Side effects so far have been flu aches and mild headache late in the treatment day and mild headache the next morning, all controlled with ibuprofen (Advil, Motrin) as needed per hospital pharmacist ok.
48 hours after that treatment is my crash and burn, no energy to low energy, and takes a good day to get over that. The in-between day is my good day and I can do mostly what I want. Have had slight twinges of the stingys in the tops of my feet, but nothing lasting yet. Currently starting my break week.
The goal of course is to get me back to a point of my test showing normal again, if that is now possible, and then learn what the maintenance would need to be to keep me there. I am staying positive throughout all of this, and have a great support system. I am a fighter and a survivor. Been through too much in my lifetime to let this get to me.
Forums
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janes76 - Who do you know with myeloma?: self MGUS
- When were you/they diagnosed?: Oct 2014
- Age at diagnosis: 56
Re: Beginning Velcade-dexamethasone treatment
Hi jane,
Best wishes for success in your treatment. It sounds like you have a great attitude.
I'm on a slightly different protocol, with Revlimid added to your Velcade and dexamethasone as myeloma therapies, and Zometa for bone strength. My treatment regimen is at a slower pace, however, than yours. I am quite a bit older, so the doc is merciful. My worst side effect is from the dexamethasone. It feels like I've had 10 cups of coffee, and I totally can't sleep that night.
Keep us informed of progress.
Best wishes for success in your treatment. It sounds like you have a great attitude.
I'm on a slightly different protocol, with Revlimid added to your Velcade and dexamethasone as myeloma therapies, and Zometa for bone strength. My treatment regimen is at a slower pace, however, than yours. I am quite a bit older, so the doc is merciful. My worst side effect is from the dexamethasone. It feels like I've had 10 cups of coffee, and I totally can't sleep that night.
Keep us informed of progress.
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bodumene - Name: bodumene
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: January, 2017
Re: Beginning Velcade-dexamethasone treatment
bodumene,
I'm not a coffee drinker, but I can certainly relate to the ramped up feeling from the dexamethasone. Late in the treatment day, I can feel my body starting to ramp up. But for some reason this time, I couldn't sleep a wink on Friday night, and Saturday I felt like someone had beat me up with a ball bat. Sunday, I was starting to feel back to somewhat normal again, and today I'm doing good. Thank goodness they give a week between rounds.
I will see my doctor next week before starting round 2. The pharmacist at the center asked me if I was talked to yet about adding the Revlimid pill to the mix yet. So maybe that is something that will be added in at a later time.
I'm not a coffee drinker, but I can certainly relate to the ramped up feeling from the dexamethasone. Late in the treatment day, I can feel my body starting to ramp up. But for some reason this time, I couldn't sleep a wink on Friday night, and Saturday I felt like someone had beat me up with a ball bat. Sunday, I was starting to feel back to somewhat normal again, and today I'm doing good. Thank goodness they give a week between rounds.
I will see my doctor next week before starting round 2. The pharmacist at the center asked me if I was talked to yet about adding the Revlimid pill to the mix yet. So maybe that is something that will be added in at a later time.
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janes76 - Who do you know with myeloma?: self MGUS
- When were you/they diagnosed?: Oct 2014
- Age at diagnosis: 56
Re: Beginning Velcade-dexamethasone treatment
Hi Jane!
Sorry to hear you're going through this, but I want to encourage you! It's good that this has been caught early on and you're getting solid treatment now.
I knew I wasn't well for probably a year before I went to my doctor (being a stubborn man)! When I got diagnosed in October. 2013, about 80% of my bone marrow was abnormal, kidneys were seriously damaged, and I was spilling huge amounts of protein. I'd gone down to 130 pounds.
The good news: After 4 months of weekly infusions of Velcade, Cytoxan (cyclophosphamide), and dexamethasone, the myeloma was completely gone as far as anything detectable in the bone marrow biopsy.
After 3 years, it's started to creep back, so we've jumped on it with another 4 months of the same regimen. Side effects are minimal: stomach a little bit off, hardly any sleep on infusion day, and crazy energy the next. Then I might crash at any moment. It's a guessing game! But nothing that keeps me from a mostly 'normal' day.
Kudos to you and your doctor for jumping on this now instead of waiting until you feel really sick! You're going to do great! I found that pushing myself to exercise and do physical activity really helped my energy level and attitude (not that I didn't take plenty of naps as needed!). It seems that there are many ways and many options to adjust treatment plans to mitigate side effects and to stay on target for getting those protein levels back in the normal range and smacking down that M spike, so don't be afraid to talk to your oncologist or even consult with another myeloma specialist - another set of trained eyes can't hurt!
Blessings on your journey!
Paul
Sorry to hear you're going through this, but I want to encourage you! It's good that this has been caught early on and you're getting solid treatment now.
I knew I wasn't well for probably a year before I went to my doctor (being a stubborn man)! When I got diagnosed in October. 2013, about 80% of my bone marrow was abnormal, kidneys were seriously damaged, and I was spilling huge amounts of protein. I'd gone down to 130 pounds.
The good news: After 4 months of weekly infusions of Velcade, Cytoxan (cyclophosphamide), and dexamethasone, the myeloma was completely gone as far as anything detectable in the bone marrow biopsy.
After 3 years, it's started to creep back, so we've jumped on it with another 4 months of the same regimen. Side effects are minimal: stomach a little bit off, hardly any sleep on infusion day, and crazy energy the next. Then I might crash at any moment. It's a guessing game! But nothing that keeps me from a mostly 'normal' day.
Kudos to you and your doctor for jumping on this now instead of waiting until you feel really sick! You're going to do great! I found that pushing myself to exercise and do physical activity really helped my energy level and attitude (not that I didn't take plenty of naps as needed!). It seems that there are many ways and many options to adjust treatment plans to mitigate side effects and to stay on target for getting those protein levels back in the normal range and smacking down that M spike, so don't be afraid to talk to your oncologist or even consult with another myeloma specialist - another set of trained eyes can't hurt!
Blessings on your journey!
Paul
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Paul58 - Name: Paul J
- When were you/they diagnosed?: October 2013
- Age at diagnosis: 54
Re: Beginning Velcade-dexamethasone treatment
Checking in ...
Thanks for the support in here as I continue through this journey.
I've just finished up round 3 of the Velcade-dexamethasone treatment. I'm on my week off and boy have I been looking forward to it so I can do a little regrouping here. I seem to be one that the further I go with the rounds, the more the treatment feels like it's kicking my butt. I am very fatigued right now and don't know what to do to try to work my way up out of it. So I'm taking it one day at a time and praying for some energy to come back to me soon. I will start round 4 next week and then will have my second set of full blood work done.
The good news is: WOW! That was the doctor's words after round 2.
My full blood work at that point was showing tremendous good changes in the amount of myeloma showing up. All numbers – IgG, lambda, and Bence Jones protein – they had all shown significant drops back into normal ranges. The goal is to have it completely gone, basically trying to get me back to the point I was before it reared its ugly self, So thus more rounds.
I was still showing an M-spike of 0.7 g/dL, down from 2.2 g/dL. The doctor feels that we are probably in what he terms as the cleaning up stage for right now. We are both feeling very optimistic at this point. He is hoping to clean up all the protein that was showing in the kidneys, and then maybe the kidneys can try to do some healing on their own from any damage that may have been done up to now. Me and the brown jug are still not best friends, but will do what I need to on this journey.
The treatment itself is not bad or very time consuming. If all goes well, I'm usually in and out in about 45 minutes. My stomach looks like it's been used for target practice with the Velcade shots. It seems to take a long time for those spots to fade away. The nurses and I are getting a little chuckle out of their target practice. Gotta keep a sense of humor through this thing!!
All in all, I am optimistic that we are making headway.
Paul, it's good to hear you've had such a wonderful response with treatment. I hope and pray that I can reach a complete remission and get a good run out of it myself. I think the worse side effect I deal with is the crashing fatigue, if it wasn't for that I'd be good to go with normalcy around here.
Thanks for the support in here as I continue through this journey.
I've just finished up round 3 of the Velcade-dexamethasone treatment. I'm on my week off and boy have I been looking forward to it so I can do a little regrouping here. I seem to be one that the further I go with the rounds, the more the treatment feels like it's kicking my butt. I am very fatigued right now and don't know what to do to try to work my way up out of it. So I'm taking it one day at a time and praying for some energy to come back to me soon. I will start round 4 next week and then will have my second set of full blood work done.
The good news is: WOW! That was the doctor's words after round 2.
My full blood work at that point was showing tremendous good changes in the amount of myeloma showing up. All numbers – IgG, lambda, and Bence Jones protein – they had all shown significant drops back into normal ranges. The goal is to have it completely gone, basically trying to get me back to the point I was before it reared its ugly self, So thus more rounds.
I was still showing an M-spike of 0.7 g/dL, down from 2.2 g/dL. The doctor feels that we are probably in what he terms as the cleaning up stage for right now. We are both feeling very optimistic at this point. He is hoping to clean up all the protein that was showing in the kidneys, and then maybe the kidneys can try to do some healing on their own from any damage that may have been done up to now. Me and the brown jug are still not best friends, but will do what I need to on this journey.
The treatment itself is not bad or very time consuming. If all goes well, I'm usually in and out in about 45 minutes. My stomach looks like it's been used for target practice with the Velcade shots. It seems to take a long time for those spots to fade away. The nurses and I are getting a little chuckle out of their target practice. Gotta keep a sense of humor through this thing!!
All in all, I am optimistic that we are making headway.
Paul, it's good to hear you've had such a wonderful response with treatment. I hope and pray that I can reach a complete remission and get a good run out of it myself. I think the worse side effect I deal with is the crashing fatigue, if it wasn't for that I'd be good to go with normalcy around here.
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janes76 - Who do you know with myeloma?: self MGUS
- When were you/they diagnosed?: Oct 2014
- Age at diagnosis: 56
Re: Beginning Velcade-dexamethasone treatment
Well, its been awhile since I've checked in. So here I am giving an update on how my treatment went.
Round 4 of my treatment did not go over so well with my body. After the first shot of that round on Tuesday, I was in deep leg pain at the time of going back for the second shot that Friday. When they realized how bad my pain was (10), the pharmacist talked to me and then talked to my doctor and came back with a deferred treatment for that day. I would be back for shot number 3 on the following Tuesday after seeing the doctor.
The doctor gave me 2 choices, I could stop at that point or go for a lowered dose. I was so close to our goal, I chose a lowered dose knowing it would still most likely give me even more side effects. He also pushed my last shot out a week to try to help with the side effects.
Before my last shot I was already dealing with the neuropathy in my feet now constantly. I called and asked the doctor if we could drop the dose on the last shot even more. He agreed, but due to my continued bad side effects, he said that would be it for me. He would have to think of something else to try. So on Tuesday I was to see the doctor again before my shot; however, it was a different doctor (mine had the day off). We did not agree about the lowered dose, however she must have finally looked at my doctor's notes again and finally gave in. It bothers me that a different doctor would not want do as my doctor directs.
I was leaving for vacation that following Sunday, but had to be put on gabapentin for the neuropathy. Vacation was different for me, with limited activities due to foot pain. But overall I had the best vacation ever.
Since the last shot of round 4, I have had 2 blood / urine checkups. All blood work and 24-hour urine show results in normal ranges and I am very proud to say my M-spike had continued to drop to 0.2 g/dL (2 g/l) after 43 days out from my last shot. My doctor says I'm in remission. I'm not sure how long that drug stays in your system, so that would be the difference I guess of the continued drop. But I am now on a watch-and-wait again to see how long my body can keep me there.
It seems 4 rounds of treatment was good for me, even if I am now struggling with the neuropathy. I am slowly finding the amount of gabapentin I need to be able to handle the leg and feet pain.
I pray I have a long time of watch and wait! Thanks for the support that has been given!
Round 4 of my treatment did not go over so well with my body. After the first shot of that round on Tuesday, I was in deep leg pain at the time of going back for the second shot that Friday. When they realized how bad my pain was (10), the pharmacist talked to me and then talked to my doctor and came back with a deferred treatment for that day. I would be back for shot number 3 on the following Tuesday after seeing the doctor.
The doctor gave me 2 choices, I could stop at that point or go for a lowered dose. I was so close to our goal, I chose a lowered dose knowing it would still most likely give me even more side effects. He also pushed my last shot out a week to try to help with the side effects.
Before my last shot I was already dealing with the neuropathy in my feet now constantly. I called and asked the doctor if we could drop the dose on the last shot even more. He agreed, but due to my continued bad side effects, he said that would be it for me. He would have to think of something else to try. So on Tuesday I was to see the doctor again before my shot; however, it was a different doctor (mine had the day off). We did not agree about the lowered dose, however she must have finally looked at my doctor's notes again and finally gave in. It bothers me that a different doctor would not want do as my doctor directs.
I was leaving for vacation that following Sunday, but had to be put on gabapentin for the neuropathy. Vacation was different for me, with limited activities due to foot pain. But overall I had the best vacation ever.
Since the last shot of round 4, I have had 2 blood / urine checkups. All blood work and 24-hour urine show results in normal ranges and I am very proud to say my M-spike had continued to drop to 0.2 g/dL (2 g/l) after 43 days out from my last shot. My doctor says I'm in remission. I'm not sure how long that drug stays in your system, so that would be the difference I guess of the continued drop. But I am now on a watch-and-wait again to see how long my body can keep me there.
It seems 4 rounds of treatment was good for me, even if I am now struggling with the neuropathy. I am slowly finding the amount of gabapentin I need to be able to handle the leg and feet pain.
I pray I have a long time of watch and wait! Thanks for the support that has been given!
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janes76 - Who do you know with myeloma?: self MGUS
- When were you/they diagnosed?: Oct 2014
- Age at diagnosis: 56
Re: Beginning Velcade-dexamethasone treatment
Janes76,
I'm so sorry to hear you are dealing with neuropathy with Velcade, but congrats on your great response to treatment! It's good you were still able to enjoy your vacation in spite of the pain.
I remember dealing with neuropathy from Velcade during my induction therapy. They did reduce the dose, and that made a huge difference. When I began maintenance therapy, I only received the Velcade shot once a week and have not had by issues other than my big toe is somewhat numb.
I hope you continue your great response to treatment.
I'm so sorry to hear you are dealing with neuropathy with Velcade, but congrats on your great response to treatment! It's good you were still able to enjoy your vacation in spite of the pain.
I remember dealing with neuropathy from Velcade during my induction therapy. They did reduce the dose, and that made a huge difference. When I began maintenance therapy, I only received the Velcade shot once a week and have not had by issues other than my big toe is somewhat numb.
I hope you continue your great response to treatment.
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Janet1520
7 posts
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