My husband (now 72) suffered back pain in the summer of 09 and a sharp eyed GP (we live in England) took blood tests which were all fine apart from a high infection level which he immediately suspected was multiple myeloma. This was confirmed as smoldering multiple myeloma by the local hospital and we were monitored until late '10. After returning from an extended hol in spain it was decided that due to low haemaglobin levels the disease was now active and we needed chemo. We took a 2nd opinion with an expert in myeloma at christies hospital in Manchester and he confirmed that the treatment (CDT) was recommended for a man of my husbands age. He also recommended changing to zometa monthly. He is just completing his 4th cycle of CDT and generally has tolerated it well. A couple of infections (with the first his paraprotein which had gone down to 4.5 from initial 35.5 then rose to 28!) Is this expected with an infection?
He suffers shaking but can bear that ok. His pps are now 17.6.
We are receiving treatment at the local hospital and have been fairly happy but would like to consider treatment from a myeloma expert. Anyone suggest when would be a good stage to request transfer to a more specialist hospital?
In addition he is complaining of tooth ache (he has already lost one tooth prior to chemo) will he have to wait until treatment is finished? We think chemo will go on for 2 more months and I see that zometa has to be stopped for 3 months before and after treatment.
Anyone have any idea of what sort of results indicate how aggressive the multiple myeloma is?
Also the Christie Dr said that he had offered sct to over 70's depending on their fitness but my husband refused to consider this Any views out there?
Sorry for so many questions but we are really coping with this on our own as his children are not really involved and my family live in Bahrain! Glad of any support!
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cassie - Name: cassie
- Who do you know with myeloma?: husband
- When were you/they diagnosed?: smm nov.09 multiple myeloma 3/11
- Age at diagnosis: 71
Re: Husbands myeloma
My partner is only 63 but he had a stem cell transplant in 2001. After that he was put on the biphosphonates - zometa - to strengthen his bones. He started to complain of toothaches and they decided to pull a tooth. At that stage no one knew much about ONJ and nobody warned him that he could get osteonecrosis and not to get any dental work done. So they pulled out a perfectly healthy tooth and the infection set in. The doctors didn't know what to do to stop it so they kept cutting off more of his jaw bone. He said the pain was much worse than the cancer and cancer treatment. He lost several good teeth, a good part of his jawbone and after a few operations, now clips some false teeth onto his existing ones to be able to blow his sax. It took a long time and a lot of pain though. Tell your doctor about the toothpain. Maybe he needs to stop the Zometa but definitely do not get any dental work done while he is on it.
As for the stem cell transplant - my partner was given only 10% chance of surviving it and he pulled through. Today they are so much more advanced medically. He says it saved his life but every person is different and I guess it depends on how well the medication works as to what further options the doctor will suggest.
As for the stem cell transplant - my partner was given only 10% chance of surviving it and he pulled through. Today they are so much more advanced medically. He says it saved his life but every person is different and I guess it depends on how well the medication works as to what further options the doctor will suggest.
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laetetia - Who do you know with myeloma?: De facto
- When were you/they diagnosed?: 2001
- Age at diagnosis: 53
Re: Husbands myeloma
Hi Cassie, I would think the doc could stop the Zometa before the chemo cycles are done. The Zometa is to prevent further bone damage, it's not actually chemo itself. So taking a short break from it shouldn't impact the effectiveness of the chemo, as far as I know. I'd hate to see your husband in agony over tooth pain for another 5 months. If the tooth pain is that bad and he'd need the tooth pulled or some kind of surgical work, I'd definitely ask his doc if the Zometa could be stopped asap. Good luck to you and your hubby.
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Fred
Re: Husbands myeloma
I'd be making sure its actually tooth pain and something wrong with the tooth. If its jaw pain then its a side effect of zometa
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laetetia - Who do you know with myeloma?: De facto
- When were you/they diagnosed?: 2001
- Age at diagnosis: 53
Re: Husbands myeloma
Thanks for your replies Leaticia and Fred. We will be speaking to Dr this week about the zometa to prepare for any work needed after chemo. Thanks for the comments on cdt, my husband does not want it but we still feel positive as there are so many more treatments coming online these days. However you seem to have more available in the states than in England! Lets hope it doesnt take too long to reach us over hear.
Thanks again its good to talk to people who understand the struggles we face. Any help with judging the type of multiple myeloma in terms of strength from anyone?
Thanks again its good to talk to people who understand the struggles we face. Any help with judging the type of multiple myeloma in terms of strength from anyone?
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cassie - Name: cassie
- Who do you know with myeloma?: husband
- When were you/they diagnosed?: smm nov.09 multiple myeloma 3/11
- Age at diagnosis: 71
Re: Husbands myeloma
I would suggest that you seek an multiple myeloma specialist now. Also ask around for an oral surgeon who is familiar with osteonecrosis of the jaw (ONJ). That is one of the possible side effects of the use of bisphosphonates - Zometa and Aredia. The recommendation is that there be no tooth extractions if there is ONJ. You don't want anything to cause damage to the jaw where infection could get in.
Here in the states people often see an multiple myeloma specialist for the development of the treatment protocol and are actually treated by their local oncologist who confers with the specialist. I don't know if you can do that in the UK, but it is something to find out about.
Good luck,
Nancy
Here in the states people often see an multiple myeloma specialist for the development of the treatment protocol and are actually treated by their local oncologist who confers with the specialist. I don't know if you can do that in the UK, but it is something to find out about.
Good luck,
Nancy
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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: Husbands myeloma
Thanks for replying Nancy I think you are right about finding a specialist now. We got a negative reaction at our local hos appointment on Thursday saying that the Drs attend the local centre of excellence on a weekly basis! What we get is 2nd hand we feel. We would much rather have the USA model. Looks as though we will have to keep paying for private 2nd opinions.
We also asked about zometa and they dont wont stop it during chemo (which will cont for 2 more sessions at least til a plateau is reached) The good news is paraproteins are now 12.2. The USA appears to focus on M-spike can anyone explain this to me? I've searched around but no luck so far. David has IgA multiple myeloma. Thanks again Ann
We also asked about zometa and they dont wont stop it during chemo (which will cont for 2 more sessions at least til a plateau is reached) The good news is paraproteins are now 12.2. The USA appears to focus on M-spike can anyone explain this to me? I've searched around but no luck so far. David has IgA multiple myeloma. Thanks again Ann
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cassie - Name: cassie
- Who do you know with myeloma?: husband
- When were you/they diagnosed?: smm nov.09 multiple myeloma 3/11
- Age at diagnosis: 71
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