Hi Lynda,
My wife did start losing hair towards the end of her CyBorD 4-month cycle. Since she subsequently had a tandem transplant with more chemo she lost the rest. Don't know if that helps answer your question.
Regarding support groups, she has no interest in going so I go, then share what's relevant. I'm in Toronto and guessing you're likely in AB.
Wish you both all the best.
Forums
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SK1 - Name: SK
- Who do you know with myeloma?: Spouse
- When were you/they diagnosed?: June 2015
- Age at diagnosis: 62
Re: Husband, 72, just diagnosed - starting CyBorD
Today, hubby saw the ophthalmologist who advised eye issue was orbital inflammatory syndrome (OIF) and not periorbital cellulitis. On both occasions both doctors said they didn't think there was any link to myeloma, but my online research shows a link to myeloma and with OIF, which can be attributed to Aredia (pamidronate), which he had 2 weeks ago. Any thoughts / experience with this?
Also, we met with an orthopedic surgeon today who is concerned about a lytic lesion above the knee that is 1/3 into the bone. It is up to hubby to have gamma rod/pins installed into the femur or just use crutches for 2-3 months til the chemo kicks in. Chemo starts tomorrow btw.
So the decision is do proactive surgery now, or use crutches for several months til the disease sorts and the bone heals, or risk potential break and deal with it after the fact - any suggestions?
Finally any thoughts on Zometa (zoledronic acid) vs Aredia? We are in Canada so will have to pay for Zometa, but my research says it it up to 25% more effective so with the surgery / not surgery dilemma, I'm wondering if we should switch.
Haven't even started chemo, ok it is tomorrow, but I'm overwhelmed and worried and just don't know what to do. Hope you can help us out.
Thank you
Also, we met with an orthopedic surgeon today who is concerned about a lytic lesion above the knee that is 1/3 into the bone. It is up to hubby to have gamma rod/pins installed into the femur or just use crutches for 2-3 months til the chemo kicks in. Chemo starts tomorrow btw.
So the decision is do proactive surgery now, or use crutches for several months til the disease sorts and the bone heals, or risk potential break and deal with it after the fact - any suggestions?
Finally any thoughts on Zometa (zoledronic acid) vs Aredia? We are in Canada so will have to pay for Zometa, but my research says it it up to 25% more effective so with the surgery / not surgery dilemma, I'm wondering if we should switch.
Haven't even started chemo, ok it is tomorrow, but I'm overwhelmed and worried and just don't know what to do. Hope you can help us out.
Thank you
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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 Lyynda,
I am so sorry to hear of what your husband is going through.
I can't really offer much advice, but I did wish to share with you my experiences with CyBorD (ocular issues) and having a rod/pins installed in my femur.
During my final (fourth) round of CyBorD, I developed a lot of eye problems (swelling, redness, itchiness, stys and a chalazion). It was a miserable time, and it is thought that the culprit was Velcade (bortezomib). I posted about my experience here, and there are several posts on this site addressing Velcade and eye issues, although your husband's particular eye issue may be unrelated. My eye situation is much better now that I'm off Velcade, but I am still trying to rid myself of one final sty before my autologous stem cell transplant next week.
When I was diagnosed with myeloma in early November 15, there was a very large lytic lesion at the top of my right femur (hip region). My doctors strongly recommended prophylactic surgery to insert a rod/pins as there was a very high probability that I would fracture it. I went ahead with the surgery - which was not too bad. I was in the hospital for just two nights. I needed to use a walker for about two weeks after the surgery and then a cane for another six weeks. I was back to driving (within 6 weeks) and walking without a cane (within 8 weeks).
The first four weeks after the surgery were somewhat painful, but Tylenol 3s adequately dealt with the pain. I also had a physiotherapist come to my house weekly (for six weeks) and I practiced the recommended daily exercises religiously. I continued my CyBorD and Aredia (pamidronate) treatments throughout my recovery from the hip surgery, and today, although my hip is not the same (weaker and still some occasional pain), I'm walking quite well and try to take my dog for a 3-4 km forest hike every day.
Karen
I am so sorry to hear of what your husband is going through.
I can't really offer much advice, but I did wish to share with you my experiences with CyBorD (ocular issues) and having a rod/pins installed in my femur.
During my final (fourth) round of CyBorD, I developed a lot of eye problems (swelling, redness, itchiness, stys and a chalazion). It was a miserable time, and it is thought that the culprit was Velcade (bortezomib). I posted about my experience here, and there are several posts on this site addressing Velcade and eye issues, although your husband's particular eye issue may be unrelated. My eye situation is much better now that I'm off Velcade, but I am still trying to rid myself of one final sty before my autologous stem cell transplant next week.
When I was diagnosed with myeloma in early November 15, there was a very large lytic lesion at the top of my right femur (hip region). My doctors strongly recommended prophylactic surgery to insert a rod/pins as there was a very high probability that I would fracture it. I went ahead with the surgery - which was not too bad. I was in the hospital for just two nights. I needed to use a walker for about two weeks after the surgery and then a cane for another six weeks. I was back to driving (within 6 weeks) and walking without a cane (within 8 weeks).
The first four weeks after the surgery were somewhat painful, but Tylenol 3s adequately dealt with the pain. I also had a physiotherapist come to my house weekly (for six weeks) and I practiced the recommended daily exercises religiously. I continued my CyBorD and Aredia (pamidronate) treatments throughout my recovery from the hip surgery, and today, although my hip is not the same (weaker and still some occasional pain), I'm walking quite well and try to take my dog for a 3-4 km forest hike every day.
Karen
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KarenaD - Name: Karen
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: November 4, 2015
- Age at diagnosis: 54
Re: Husband, 72, just diagnosed - starting CyBorD
Karen,
Thank you for this. It is comforting to read about similar situations, though the situation isn't rosy. Hubby's lytic lesion is near the knee. He just started chemo today and the "team" approach is going to be some radiation to the lesion in a couple of weeks and continuation of the CyBorD as it is so vital. He was diagnosed about 5 weeks ago and chemo was already delayed due to the eye issue. He is going to use a cane in the meantime and the doctors will determine if / when his bone is good enough to start resuming his activity.
Nice to know you are walking daily. I am sure your dog is happy to be with you. Are you in western Canada, if you don't mind me asking? We are in BC.
Again, thanks for sharing.
Thank you for this. It is comforting to read about similar situations, though the situation isn't rosy. Hubby's lytic lesion is near the knee. He just started chemo today and the "team" approach is going to be some radiation to the lesion in a couple of weeks and continuation of the CyBorD as it is so vital. He was diagnosed about 5 weeks ago and chemo was already delayed due to the eye issue. He is going to use a cane in the meantime and the doctors will determine if / when his bone is good enough to start resuming his activity.
Nice to know you are walking daily. I am sure your dog is happy to be with you. Are you in western Canada, if you don't mind me asking? We are in BC.
Again, thanks for sharing.
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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,
I'm located in Ontario (half way between Toronto and London).
Wishing you both the best of luck on this journey.
Karen
I'm located in Ontario (half way between Toronto and London).
Wishing you both the best of luck on this journey.
Karen
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KarenaD - Name: Karen
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: November 4, 2015
- Age at diagnosis: 54
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