Whew, I think I am very glad to have found this group. In just one month, my husband's sore back issues have brought me here. He has not yet accepted this diagnosis, and I am doing everything I can to support him and spend most sleepless nights scouring the internet for information. Every day I learn a lot more.
Richard has felt not himself for a few years and last summer I thought he looked a bit gray and didn't like his dry cough that he'd had on and off for a few years. His chest X-ray was clear but there was a spot on his "psoas muscle" that looked a bit odd (identified by his chiropractor, not the radiologist).
Well, due to back pain a month ago, his golf buddies in California told him to head on over and get an MRI. Two days later he read his results - basically, get yourself some prompt CT scans. Two days later he had a primary physician and CT scans. Then an oncologist consult the following day, a needle biopsy of his plasmacytoma two days later with a diagnosis of Stage 3 multiple myeloma two days after that. Stage 3 due to innumerable lytic bone lesions. Everything else clear – no kidney issues, nothing.
Recommended 10 doses radiation on L2 area of spine and plasmacytoma of iliac area, zoledronic acid (Zometa), and Revlimid, Velcade, and dexamethasone (RVD).
Because we did this on our own dollar and weren't insured in the USA and were worried about a catastrophic event, we got ourselves home to Canada and immediately had blood tests and a bone marrow biopsy, more CT scans, full skeletal imaging, urine test and another MRI.
Different treatment plan and told it was Stage 1 based on ISS standards: 1 radiation treatment, albeit heavy duty, on L2 area due to lesion pressing into spinal cord area, and 1 treatment on lgE. 10 cm plasmacytoma in the upper iliac area. Today, about 10 days after that, he had his first pamidronate (Aredia) infusion (3 hours), and he starts chemo with cyclophosphamide, Velcade, and dexamethasone (CyBorD) on Friday. Plan is 9 five-week cycles, taking it one day a week, for a total of 45 weeks. We go to "chemo class" on Wednesday to learn all about it.
I haven't seen the lab work but I can tell you what I know:
Kappa free light chain 213.8, ratio 30.11
IgG kappa 5.7 g/L
Bone marrow involvement 20%
Albumin 41
B2M 3
and of course, innumerable skeletal wide osseous lytic bone lesions, focal marrow etc.
He has pain in his right shoulder that won't go away and pain in his left knee, and they are going to do a CT scan on those areas soon. Don't have an appointment yet.
So that is what I know today . My worry is what I don't know, and I hope you can help with your experience here.
We want to meet with the oncologist before Friday, and I have so many questions. I am told even if he has a good result he will stay on the regimen for the full nine cycles as in Canada we don't have the sophisticated monitoring systems they have in the USA. Also, Canada doesn't use Revlimid until second line treatment. Hence cyclophosphamide instead of Revlimid in Canada. I am praying that the regimen here is good enough as it is different from what they offered in the USA. From what I am reading it appears it is, but I would appreciate your input.
Because of his age, a few months short of 73, he has been told in both the USA and Canada that he is not a stem cell transplant candidate, though he is not on any other medication at all. He used to have high blood pressure, but that has normalized over the past few months ... interestingly while he had the disease but didn't know it.
We absolutely feel blessed to have had such prompt access to the dedicated angels helping us on this journey both in the USA and Canada. I am at a loss to know how truly serious this is for him as Stage 3 vs Stage 1 is a contradiction, and he is very weak and tired. He didn't have anemia, but I am not sure on that. We haven't been given his full lab results. The doctor just gave us some key ones that I shared above. On one hand, I think the numbers above don't look too bad, and even with innumerable lesions his blood calcium is normal and his kidneys are clear! All other organs and lymph are clear.
If anyone can give me some honest thoughts on what you think about this, I would really appreciate it. I am so new to this.
I have one burning question: If testing after a cycle or two shows no change, is that actually good, as it would mean there is no progression? Or do you want to see numbers go to more normal numbers after each cycle? I get it if they get worse.
Also, any insight on what kinds of side effects to really watch out for on CyBorD? That would help cause the oncologist just tells us that the chemo is usually well tolerated, but I have read the litany of side effects for each of the drugs and I can't imagine him sailing through chemo.
And any other insight you can give me, really good or bad, is ok. I want to know what I am dealing with here. I have bought a cancer cookbook and will be feeding him according to his side effects and will try and keep his nourishment up. I have made him green smoothies daily for years and interestingly enough he reacted to the turmeric just before he was diagnosed – vomiting and nausea. He doesn't think I put any in his smoothie now, but I do but in just a small amount so he won't reject it. I find it interesting that his body appears to be rejecting something that fights cancer. It is like they are the bullies here.
Sorry to have gone on for long. Thank you for listening. I have read so many posts. A lot of numbers get bantered about and, based on that, I asked the oncologist for more numbers. He said don't get too wrapped up in them. Soooo ... maybe that is good advice. But I just don't want to be in the dark.
Again, thank you. We are being treated in Victoria, British Columbia, Canada, by the way.
Forums
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lyynda - Name: Lynda
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: March 2016
- Age at diagnosis: 72
Re: Husband, 72, just diagnosed - starting CyBorD
Hi Lynda from a fellow Canadian (S. Ontario); there are a number of Canadians on this website.
Ya, one major difference between myeloma treatment in Canada versus US is the requirement that Revlimid can only be used as second line therapy in most provinces; Pomalyst is a third line therapy in a few provinces.
CyBorD is comprised of cyclophosphamide, Velcade (bortezomib) and dexamethasone. Based on my dad's feedback, cyclophosphamide has given him little side effects but a dry mouth, Velcade has likely increased my dad's leg pain and dexamethasone gives him anger issues and sleepless nights the first two days after he takes the dex pills.
Ya, one major difference between myeloma treatment in Canada versus US is the requirement that Revlimid can only be used as second line therapy in most provinces; Pomalyst is a third line therapy in a few provinces.
CyBorD is comprised of cyclophosphamide, Velcade (bortezomib) and dexamethasone. Based on my dad's feedback, cyclophosphamide has given him little side effects but a dry mouth, Velcade has likely increased my dad's leg pain and dexamethasone gives him anger issues and sleepless nights the first two days after he takes the dex pills.
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Little Monkey - Name: Little Monkey
- Who do you know with myeloma?: Father-stage 1 multiple myeloma
- When were you/they diagnosed?: March/April of 2015
Re: Husband, 72, just diagnosed - starting CyBorD
Well, you've had quite a ride so far. You made a good decision to head home to Canada for treatment since you don't have insurance in the US. Myeloma treatment is expensive and could be ongoing for your husband.
It's difficult to predict what side effects your husband might have from the CyBorD, but most people seem to tolerate it quite well. Usually the culprit that causes the most problems is the dex. Depending on the dose that your husband will be getting, he is likely to have at least 1-2 days of hyperactivity with little sleep followed by 1-2 days of a crash from the dex. Some people also have mood swings that can be quite disturbing. If your husband has a difficult time with the Dex, you can ask the doctor if it is possible to decrease the dose. Usually people are started at 40 mg per week, but many have been reduced to 20 mg per week, or less. The dex is needed with the Velcade as an anti-inflammatory, but it also has a synergistic cancer effect with the other drugs. Your husband should also be prescribed an anti-viral such as acyclovir while on the Velcade to guard against developing shingles.
It also is difficult to predict how quickly someone may, or may not, respond to a treatment regimen. I responded within the first round of Revlimid and dex, but others take longer. Hopefully your oncologist won't jump to another regimen if there isn't a significant positive response in the first 2 rounds. If your husband's numbers increase while on the regimen, then it is definitely time to switch to another regimen.
Also, ask for copies of all of your husband's tests each time he has lab work and scans done. It's important to track the results over time. I hope that you obtained copies of all of the tests that were done when you were still in the US.
Finally, you may wish to look for a support group that might be in your area. Meeting and talking with other patients and caregivers with myeloma is invaluable. You learn a lot from those who are further along in treatment than your husband. The one I go to has a guest speaker each month. The people who come are people who are newly diagnosed to people who have been living with myeloma for >20 years.
All the best for your husband and for you,
Nancy in Phila
It's difficult to predict what side effects your husband might have from the CyBorD, but most people seem to tolerate it quite well. Usually the culprit that causes the most problems is the dex. Depending on the dose that your husband will be getting, he is likely to have at least 1-2 days of hyperactivity with little sleep followed by 1-2 days of a crash from the dex. Some people also have mood swings that can be quite disturbing. If your husband has a difficult time with the Dex, you can ask the doctor if it is possible to decrease the dose. Usually people are started at 40 mg per week, but many have been reduced to 20 mg per week, or less. The dex is needed with the Velcade as an anti-inflammatory, but it also has a synergistic cancer effect with the other drugs. Your husband should also be prescribed an anti-viral such as acyclovir while on the Velcade to guard against developing shingles.
It also is difficult to predict how quickly someone may, or may not, respond to a treatment regimen. I responded within the first round of Revlimid and dex, but others take longer. Hopefully your oncologist won't jump to another regimen if there isn't a significant positive response in the first 2 rounds. If your husband's numbers increase while on the regimen, then it is definitely time to switch to another regimen.
Also, ask for copies of all of your husband's tests each time he has lab work and scans done. It's important to track the results over time. I hope that you obtained copies of all of the tests that were done when you were still in the US.
Finally, you may wish to look for a support group that might be in your area. Meeting and talking with other patients and caregivers with myeloma is invaluable. You learn a lot from those who are further along in treatment than your husband. The one I go to has a guest speaker each month. The people who come are people who are newly diagnosed to people who have been living with myeloma for >20 years.
All the best for your husband and for you,
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: Husband, 72, just diagnosed - starting CyBorD
BC Cancer has been wonderful to us. We're in the Vancouver area. My husband was also treated with CyBorD and although he didn't go to transplant, has been in complete remission (CR) since January 2015. He was offered Revlimid maintenance, but decided to go drug free until / unless he relapses.
We just got back from 2 weeks in Sri Lanka birdwatching. My husband had massive bone damage, including a 10 cm hole in his iliac that healed, and 5 fractured vertebrae.
Lisa
We just got back from 2 weeks in Sri Lanka birdwatching. My husband had massive bone damage, including a 10 cm hole in his iliac that healed, and 5 fractured vertebrae.
Lisa
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LisaE - Name: Lisa
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: April 2014
- Age at diagnosis: 67
Re: Husband, 72, just diagnosed - starting CyBorD
First time replying to a post so hope this works.
Thank you for responding to my post. I feel relieved to have connected to you, and it is good to learn about other's experiences, be they good or bad. I am just composing a list of questions for the oncologist which I will email tomorrow and hope to get a meeting with him the day before the first day of chemo on Friday April 1.
Wondering since you lose your hair on cyclophosphamide, does it come back after all nine cycles are finished, which will be in 45 weeks? Or does it grow back once the initial shock is over?
Also any suggestions for wigs for men? (Tho I think we could resurrect his old Austin Powers wig from the party bag! Well, we are anticipating having a few laughs over the bald head as it might help!)
Hubby says he doesn't want to go to a support group, but I think I will try and persuade him to give it a try once and take it from there.
Thank you again..
Thank you for responding to my post. I feel relieved to have connected to you, and it is good to learn about other's experiences, be they good or bad. I am just composing a list of questions for the oncologist which I will email tomorrow and hope to get a meeting with him the day before the first day of chemo on Friday April 1.
Wondering since you lose your hair on cyclophosphamide, does it come back after all nine cycles are finished, which will be in 45 weeks? Or does it grow back once the initial shock is over?
Also any suggestions for wigs for men? (Tho I think we could resurrect his old Austin Powers wig from the party bag! Well, we are anticipating having a few laughs over the bald head as it might help!)
Hubby says he doesn't want to go to a support group, but I think I will try and persuade him to give it a try once and take it from there.
Thank you again..
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lyynda - Name: Lynda
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: March 2016
- Age at diagnosis: 72
Re: Husband, 72, just diagnosed - starting CyBorD
LisaE,
Oh my goodness, you have given me such hope, as Richard has the same size tumour and sounds like same location.
Can you tell me, how long did Tom take pamidronate, and how are his bones now? Richard has been told he can't golf until he has had 5 or 6 infusions. He just had his first infusion yesterday. He has 1 fractured rib but no other fractures. Just complete skeletal involvement.
I hope we will be able to go bird watching some day. Congratulations and it is so nice to connect with you, being so close.
Oh my goodness, you have given me such hope, as Richard has the same size tumour and sounds like same location.
Can you tell me, how long did Tom take pamidronate, and how are his bones now? Richard has been told he can't golf until he has had 5 or 6 infusions. He just had his first infusion yesterday. He has 1 fractured rib but no other fractures. Just complete skeletal involvement.
I hope we will be able to go bird watching some day. Congratulations and it is so nice to connect with you, being so close.
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lyynda - Name: Lynda
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: March 2016
- Age at diagnosis: 72
Re: Husband, 72, just diagnosed - starting CyBorD
My dad hasn't lost really any hair on cyclophosphamide. He's been on CyBorD for two months now.
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Little Monkey - Name: Little Monkey
- Who do you know with myeloma?: Father-stage 1 multiple myeloma
- When were you/they diagnosed?: March/April of 2015
Re: Husband, 72, just diagnosed - starting CyBorD
My husband had radiation on the tumour. As well as on the spinal lesions.
This posting that I made in a different forum thread has more detail, as well as before and after X-rays. Take a look. It's pretty inspiring.
He did just over a year of pamidronate monthly, then dropped to quarterly for 3 more session. But with no monoclonal protein showing up for over a year they stopped it.
For a guy who couldn't walk for 6 months, and the needed a walker he's killing it. He's got a 3 cm leg length difference from the bone damage and so has orthotics and a lift on the right shoe. You'd notice a slight limp when he walks without them. But he was walking 4-5 miles a day in Sri Lanka. He's on the recumbent bike for an hour 3x per week.
He won't ski anymore (which fills me with relief) but otherwise he's doing all the walking and exercising he wants.
This posting that I made in a different forum thread has more detail, as well as before and after X-rays. Take a look. It's pretty inspiring.
He did just over a year of pamidronate monthly, then dropped to quarterly for 3 more session. But with no monoclonal protein showing up for over a year they stopped it.
For a guy who couldn't walk for 6 months, and the needed a walker he's killing it. He's got a 3 cm leg length difference from the bone damage and so has orthotics and a lift on the right shoe. You'd notice a slight limp when he walks without them. But he was walking 4-5 miles a day in Sri Lanka. He's on the recumbent bike for an hour 3x per week.
He won't ski anymore (which fills me with relief) but otherwise he's doing all the walking and exercising he wants.
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LisaE - Name: Lisa
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: April 2014
- Age at diagnosis: 67
Re: Husband, 72, just diagnosed - starting CyBorD
On Thursday, Richard was one day away from getting his first chemo treatment and had what he thought was a sinus infection. No fever, so the doctors suggested he take an antihistamine to rule out allergies. That didn't help and later that day his eye was so swollen and it started coming forward out of the socket.
Off to emergency ... CT scan, blood work indicated periorbital cellulitis with proptosis (bulging eye), so he was admitted to hospital and put on IV antibiotics for 2 days, was released yesterday afternoon with 8 week prescription for prednisone. His body is supposed to fight the infection with the kickstart from the IV infusion. Not sure how this will impact his chemo regimen. He was scheduled for every Friday for 9 cycles and, due to the hospitalization, last Friday – which would have been his first chemo – didn't happen.
So we will hear from the doctor this week as to where we go from here. This is a setback. However, the oncologist said it is better that this happened before chemo as he has a better chance of fighting it. I guess we are learning about the impact of this disease. His typical sinus / cold annual thing is no longer typical now that multiple myeloma is in the picture...
Learning to take one day at a time, though, is pretty scary. That was the first time Richard has been in the hospital overnight in his entire LIFE. and he is nearly 73...
Well, wonder what next week will bring. His eye looks so much better..
Off to emergency ... CT scan, blood work indicated periorbital cellulitis with proptosis (bulging eye), so he was admitted to hospital and put on IV antibiotics for 2 days, was released yesterday afternoon with 8 week prescription for prednisone. His body is supposed to fight the infection with the kickstart from the IV infusion. Not sure how this will impact his chemo regimen. He was scheduled for every Friday for 9 cycles and, due to the hospitalization, last Friday – which would have been his first chemo – didn't happen.
So we will hear from the doctor this week as to where we go from here. This is a setback. However, the oncologist said it is better that this happened before chemo as he has a better chance of fighting it. I guess we are learning about the impact of this disease. His typical sinus / cold annual thing is no longer typical now that multiple myeloma is in the picture...
Learning to take one day at a time, though, is pretty scary. That was the first time Richard has been in the hospital overnight in his entire LIFE. and he is nearly 73...
Well, wonder what next week will bring. His eye looks so much better..
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lyynda - Name: Lynda
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: March 2016
- Age at diagnosis: 72
Re: Husband, 72, just diagnosed - starting CyBorD
I hope the antibiotics and the dex are helping with the eye problem. I'm glad that you rushed him to the ER because a cellulitic infection can become extremely serious quickly. The first weeks and months after a myeloma diagnosis can be pretty scary with all that you have to learn and with all that can happen to previously healthy people. But, it sounds like your husband's doctors are on top of things and will see that he comes through this period well.
I don't think any of us answered your question about the differences in the US and Canadian diagnosis of stage of cancer. The stage of the cancer really isn't as important as the risk level from the genetic testing for abnormalities found in the bone marrow biopsy. Some people at stage I don't do well at all and many people at stage III fly through their treatments with few problems. It's more important to pay attention to how your husband does with the CyBorD treatment than with worrying about staging. CyBorD is a very common induction regimen as is RVD. Both appear to be equally as effective in controlling the myeloma.
All the best to you and your husband and I hope he is able to start his treatment soon.
Nancy in Phila
I don't think any of us answered your question about the differences in the US and Canadian diagnosis of stage of cancer. The stage of the cancer really isn't as important as the risk level from the genetic testing for abnormalities found in the bone marrow biopsy. Some people at stage I don't do well at all and many people at stage III fly through their treatments with few problems. It's more important to pay attention to how your husband does with the CyBorD treatment than with worrying about staging. CyBorD is a very common induction regimen as is RVD. Both appear to be equally as effective in controlling the myeloma.
All the best to you and your husband and I hope he is able to start his treatment soon.
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
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