[Multibilly]

Re: Multiple lesions, starting Zometa next month

by Multibilly on Wed Oct 08, 2014 9:23 am

Kully,

Regarding your doc's reference to an English study on Zometa, he may be referring to this study.

"First-line treatment with zoledronic acid as compared with clodronic acid in multiple myeloma (MRC Myeloma IX): a randomised controlled trial," The Lancet, Dec. 2, 2010.

Note that I believe that the UK national guidelines for the duration of use of Zometa for multiple myeloma are "indefinite".

But you are right that it makes sense to be cautious about the long term use of Zometa ... and maybe get a second opinion.

[Castaway]

Re: Multiple lesions, starting Zometa next month

by Castaway on Wed Oct 08, 2014 11:42 am

Thanks again for all the input!

sphilip,

My oncologist told me during my first treatment of Revlimid / dex that the fact that I initially broke four ribs was a sign that my bones were basically screaming for help. He wanted to start the Zometa then but, as I mentioned, I had too many dental issues to deal with. So he said the best thing to do until I finished the dental work was to take some Caltrate 600 plus D. He also said to take the Caltrate twice per day. That way, I am getting 1200 plus D. One in the a.m., and one in the evening. The only other thing I take is a multivitamin. I will ask him about adding more D.

You mentioned that you were on Velcade / dex. That's what I am currently on with the idea of a stem cell harvest / storage before the end of the year.

Did you get your Zometa on one of the days that you received a Velcade injection? My on­col­o­gist said I could do both at one time. I am not so sure about that idea. So far, "Knock on wood", the Velcade injections have only made me a bit tired the day after. Not really sleepy, but tired.

Thanks for your input.

Dano,

Thanks for your input and experience with Zometa.

Just curious, did you first start out with a 15 minute infusion and then asked for a longer in­fusion time due to your reaction? My oncologist has several multiple myeloma patients that he treats. So I don't know if they are all getting 15 minute infusions, but he feels that I should be ok with 15 minutes. Staying hydrated seems to be a big part of it. I will ask a lot of questions at my next office visit, which will be two weeks before the Zometa starts.

Thank You.

[Rneb]

Re: Multiple lesions, starting Zometa next month

by Rneb on Wed Oct 08, 2014 12:24 pm

Other than dates involved, sphilip's experience (described earlier in this thread) has pretty much been my own overall research, experience and response with Zometa. (2012-14)

The key seems to be multiple myeloma Control--if you are "neutral" or better in multiple myeloma disease Control---the osteoclast / osteoblast matrix balance are nearer "normal" in function, and bone repair (if available calcium exists) can occur. How much ? Your mileage may vary.

If you are not in fair to good response vis-a-vis the multiple myeloma, the Osteoclasts will continue to eat away...and the osteobalsts stay on the sideline. Bone loss will be expected. Hypercalcemia is then an added issue.

Zometa does have anti-MM effect--the degree to which, is debated. However, Revlimid, Velcade, etc are for battling the multiple myeloma directly, and they seems to be "Potentiated" by the Zometa. Bio-chemically, this is poorly understood, at the moment. Ditto zometa and post-radiation.

I typically have mild-moderate "Flu-like" symptoms in the first 3-4 days after an infusion. Not much thereafter. Other posters have pointed out what works for them. I am in Accord.

I think "half-life" is mis-quoted in Sphilip's post.

My 7th rib lesion is suggestively more cartilage than bone (healed)--but atleast it is stable. The skull, hip, and other lesions appear fairly normal on x-ray and are stable.

I am taking Zometa every 3 months, now. I go to "Chernobyl" ( Treatment Center) in the a.m. for my next dose.

Good luck.

[Salzmav]

Re: Multiple lesions, starting Zometa next month

by Salzmav on Thu Oct 09, 2014 9:50 pm

I'm 55 and was diagnosed with smoldering myeloma 2 years ago - it has progressed to 'grumbling' myeloma and is on the way to becoming active. I had a full-body x-ray, and I have no lesions, however I do have osteopenia.

I was on bisphosphonate tablets for around 4 months, then my new haematologist put me on Zometa transfusions. I am also a horse rider, and that is my passion, so strong bones are a must really. I have been on bisphosphonates for around 12 months now. And I am due for my next set of x-rays, bone density etc. within the next 2 months.

After the first transfusion, it felt like I had been hit by a Mack truck. Over a few days, the pain subsided, it felt like I had been bumped by a Mini Minor.

After the second transfusion, there was a moderate amount of pain.

Subsequent infusions have not caused any trouble at all.

I have an under-the-skin chest port installed for easier delivery of the Zometa infusion, as I have shockingly stingy veins that hate giving up anything

I have yet to have my next lot of bone scans etc. done. It would be fantastic if not only the Zometa prevented further damage, but regressed the osteopenia!

I was thrown from a horse just before my diagnosis and broke 6 ribs and crushed a vertebra.

[NStewart]

Re: Multiple lesions, starting Zometa next month

by NStewart on Fri Oct 10, 2014 3:17 pm

Castaway-
As is common to all of our experiences with myeloma, everyone is different. I've been getting Zometa infusions for 5 1/2 years with 2 breaks for transplant and later for surgery. During both breaks I ended up with a rib fracture after the transplant and an extremely painful lesion in the fibula of my leg that had the knee replacement surgery. So, my oncologist has kept me on Zometa since my bones seem to develop symptomatic lesions quite quickly. I had relapsed just prior to the knee surgery and wasn't on treatment until 2 months post surgery.

My lesions are everywhere. Some have improved over the years and some have remained the same. The 2 fractures that I have had - left humerus and right rib 10 - always have a comment of healing fractures. The comment with the results also mention diffuse osteopenia.

2 years ago my PCP ordered vit D levels to be done in my blood work. They came back with extremely low levels of Vit D. I was prescribed 12,000 mg of vit D3 for 2 months and then was to drop to 2000 mg of vit D3 per day after that. I've been following that regimen along with taking 500 mg of calcium a day. The information packet for Zometa that you can find online recommends that anyone who is getting an infusion of Zometa take both calcium and vit D3 while getting the infusions. I started doing that when I started the infusions 5 1/2 years ago, but not the level of vit D3 that I take now.

My infusions were monthly during the induction period because I had had a pathologic fracture of my left humerus. When I restarted the infusions 100 days after my transplant I continued at monthly infusions until my oncologist increased the time between follow-up visits to 6 weeks. I have been on the 6 week schedule now for 3 years. I receive the infusion in 15 minutes and have never had any problems with the infusions. No flu-like symptoms, nausea, headaches, etc. So, we are all different.

Good luck with the start of this new addition to your treatment regimen. The Zometa definitely helps with the pain I get in my fracture sites. I can tell when I am due for the next infusion because they begin to ache. Within hours of receiving the infusion the achiness in the bones resolves.

Nancy in Phila

[Castaway]

Re: Multiple lesions, starting Zometa next month

by Castaway on Fri Oct 10, 2014 5:39 pm

Thanks again for all the replies. Lots of good information.

Salzmav,

I thought I had it bad with four broken ribs. You must have been in terrible pain, ribs and vertebra. I know that I had to sleep on my back when I broke mine and I don't like sleeping in that position, but what can you do? Slowly three of my least broken bones healed, and I could sleep on one side. The other rib was broken and shifted so it was a slow healing process.

Thanks for sharing your Zometa experience.

Nancy,

Zometa for 5 1/2 years and no terrible symptoms. That's great. But I am truly sorry for all your issues with fractures and lesions. I really think that we are all different when it comes to all these treatments and procedures. When I had my bone marrow biopsy, I really didn't feel any pain at all. Just kind of a tug at my hip. The shot to numb me up had a little sting but really not bad. I guess I shouldn't shoot my mouth off too much, the next one might be different.

I just started subcutaneous Velcade injections, and I like the 10 days off between cycles. I will see how my labs look next week. I will try to stay hydrated for the Zometa. I usually drink a lot of water anyway. I just might let my doc have his way the first treatment but I will voice my concerns about longer infusion times and a few other things before the treatment.

Rneb,

Thanks for your information. I will see what symptoms I end up with. Hopefully it will be minimal. Great info and it's really appreciated. Getting to the end of my 10 days off from Velcade and tonight I am having dexamethasone. Yummie!

[Dano]

Re: Multiple lesions, starting Zometa next month

by Dano on Mon Oct 13, 2014 8:24 pm

George,

Sorry for the delayed reply. I'm currently going thru stem cell transplant. I was advised from the beginning to request that Zometa be infused over 45 minutes. My first infusion was given over 45 minutes and the reaction was fever and chills. I understand that many patients do not get any reaction at all.

Good luck