Hi there,
My name is Heidi. My dad is 82 and was diagnosed with Multiple Myeloma about 6 months ago. While I don't know all the details, I know he is on Revlimid and that while his numbers were decent at first, they are no longer indicating that the medication is working. (I apologize I don't know exact details right now.)
The thing that makes this very tough for him is that he has Asperger's Syndrome, and I believe that his constant interest in learning more and asking so many questions, has overwhelmed his doctors. I am investigating this forum here, as a possible place for him to come and learn and chat to his heart's content. He is incredibly frustrated only having 10 minutes a month to communicate about his disease. He is not that comfortable with computers, but I am thinking about getting him an ipad so he can explore here and also to be able to do video calls with me.
In lieu of that, perhaps I can proxy for him and talk to you all in the meantime.
I do have two questions off the bat.
1) Are there other oral treatments coming down the pike? He is not excited about the idea of going in weekly for Velcade...
2) He just started having bad edema in his feet. Up to now, he has been VERY active and goes to the gym several times a week which keeps him sane. Does the edema tend to come and go, or is this going to start dooming his quality of life here on a regular basis?
Thanks so much for being here!!! I look forward to getting to know everyone!
Forums
Re: Newbie - Daughter of Patient
Heidi, you should certainly encourage your father to join the forums here. There are so many members (patients, caregivers, and physicians too) who are extremely friendly and helpful. He may find that many of his questions have already been answered here, and I'm sure people would be happy to answer his additional questions.
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Frank
Re: Newbie - Daughter of Patient
Hi Newbie,
So sorry to hear about your dad. As a patient, I would say in terms of quality of life (QOL) if it was my dad..I would request carfilzomib over Velcade...which causes significant peripheral neuropathy.
Just my thoughts as a patient.
Also, you may want them to have them find out/evaluate why he is having edema...what is the cause? Is it renal insufficiency? Find out.
Wishing you all the best!!
So sorry to hear about your dad. As a patient, I would say in terms of quality of life (QOL) if it was my dad..I would request carfilzomib over Velcade...which causes significant peripheral neuropathy.
Just my thoughts as a patient.
Also, you may want them to have them find out/evaluate why he is having edema...what is the cause? Is it renal insufficiency? Find out.
Wishing you all the best!!
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suzierose - Name: suzierose
- When were you/they diagnosed?: 2 sept 2011
Re: Newbie - Daughter of Patient
Hi Newbie,
Like the others who have offered advice so far, I'm sorry to hear about your father's situation. I agree with Frank that this forum is probably a very good resource for your father.
Even if your father is not very excited about the possibility of having to go in regularly for medication injections, he really needs to think about what is best for him in the long term. Right now, if his Revlimid is really starting to fail, switching to Velcade or Kyprolis or another drug similar to those two may be an option he will seriously need to consider.
Is your father seeing a myeloma specialist at a major cancer center? If he isn't, then he definitely should be, since the specialists will know best what sort of options will be worth pursuing given what your father already has been treated with.
Also, has your father ever had a stem cell transplant? If not, that is something he and his doctors will probably want to discuss.
There are oral drugs similar to Velcade and Kyprolis that are being tested in clinical trials, so your father might consider participating in such a trial if he really wants to get an oral medication. There is oprozomib from Onyx which is in the early stages of development, and also MLN9708, which is further along in development, and which is from the same company that developed Velcade
Another option would be to consider adding Biaxin to your father's Revlimid. Biaxin is an antibiotic but it also has been shown in trials to act against myeloma. It also can be taken orally. It has been tested in a number of trials together with Revlimid and dexamethasone.
In terms of Velcade versus Kyprolis, I suspect it's too early to be thinking about that decision. You father needs to consult with a myeloma specialist first. If they feel he should go in that direction, however, your father should check to make sure his insurance covers Kyprolis, and he also should check the presentation by Dr. Orlowski from MD Anderson that is mentioned in this article:
https://myelomabeacon.org/news/2012/06/08/extensive-carfilzomib-clinical-trial-results-presented-asco-2012/
There is a link to Dr. Orlowski's presentation at the end of the article. Your father will probably love all the details and nuances that get discussed in the slides!
I hope we will see your father in the forum sometime soon. I am sure he will add a lot to the discussion.
Like the others who have offered advice so far, I'm sorry to hear about your father's situation. I agree with Frank that this forum is probably a very good resource for your father.
Even if your father is not very excited about the possibility of having to go in regularly for medication injections, he really needs to think about what is best for him in the long term. Right now, if his Revlimid is really starting to fail, switching to Velcade or Kyprolis or another drug similar to those two may be an option he will seriously need to consider.
Is your father seeing a myeloma specialist at a major cancer center? If he isn't, then he definitely should be, since the specialists will know best what sort of options will be worth pursuing given what your father already has been treated with.
Also, has your father ever had a stem cell transplant? If not, that is something he and his doctors will probably want to discuss.
There are oral drugs similar to Velcade and Kyprolis that are being tested in clinical trials, so your father might consider participating in such a trial if he really wants to get an oral medication. There is oprozomib from Onyx which is in the early stages of development, and also MLN9708, which is further along in development, and which is from the same company that developed Velcade
Another option would be to consider adding Biaxin to your father's Revlimid. Biaxin is an antibiotic but it also has been shown in trials to act against myeloma. It also can be taken orally. It has been tested in a number of trials together with Revlimid and dexamethasone.
In terms of Velcade versus Kyprolis, I suspect it's too early to be thinking about that decision. You father needs to consult with a myeloma specialist first. If they feel he should go in that direction, however, your father should check to make sure his insurance covers Kyprolis, and he also should check the presentation by Dr. Orlowski from MD Anderson that is mentioned in this article:
https://myelomabeacon.org/news/2012/06/08/extensive-carfilzomib-clinical-trial-results-presented-asco-2012/
There is a link to Dr. Orlowski's presentation at the end of the article. Your father will probably love all the details and nuances that get discussed in the slides!
I hope we will see your father in the forum sometime soon. I am sure he will add a lot to the discussion.
Re: Newbie - Daughter of Patient
Hi Newbie...if you type in 'Elderly Patients' in the search box at the top right of the screen, a number of articles will come up about research studies in your father's age group. That could be informative for you, and a basis of discussion with your doctors. I agree with the others that you should be seeing an oncologist, who is very knowledgeable about multiple myeloma. Your father is fortunate to have you helping him through this difficult time.
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: Newbie - Daughter of Patient
Mother was diagnosed with multiple myeloma almost three years ago. This has been a roller coaster event to say the least. She recently went through stem cell transplant in feb.. And so far so good. She has just started her Revlimid and is on her second round. She has started having edema in her feet. The doctor says it is a side effect of her Revlimid. Praying for your father and praying for a cure!!!!
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Mother has mm
Re: Newbie - Daughter of Patient
Hi - I have problems with my feet which I believe were caused by the treatment I recieved in 2004 for multiple myeloma , I am not sure what those of you using the term Edema are actually referring to ? are we talking skin rash's or bigger under lieing problems with the feet ? my problems go way beyond a rash type of problem & I would gladly trade them for a rash any day . I can express sympothy for your dads frequency of treatment - I go in once every 4 months for the multiple myeloma and that gets to be a bit of a drag at times. BUT as the actor Morice C. said about growing old ( this would apply to freq treatment as well) "when one considers the alternative it doesn't look so bad" . I wish they would get "spell check" operational on this site -between ageing and treatments my spelling has deterated quite a bit , I still have a reasonable command of the english Language but it does not look that way if evey other word is mispelled .good luck to your Dad , my computer skills are not top of the line but I have found this site quite enlightning as I'm sure he will best regards N.G.
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Nipon Ginko - Name: Nipon Ginko
- Who do you know with myeloma?: ME
- When were you/they diagnosed?: 2004
- Age at diagnosis: 66
Re: Newbie - Daughter of Patient
Hi Nipon, thank you for the suggestion about adding a spell checker to the Beacon forums.
Your web browser may have spell check built into it (all major browsers do except for Internet Explorer).
When you're composing your posting, do red squiggly lines show up under misspelled words? If so, place your cursor over the word and right click. A list of suggested words will appear in the pop-up. Left click on the intended word to correct the spelling.
If you are using Internet Explorer, there is an add-in that will add spell checking capabilities. Here is some information about it:
http://www.speckie.com/home
It works with all versions of Windows and all versions of Internet Explorer.
Your web browser may have spell check built into it (all major browsers do except for Internet Explorer).
When you're composing your posting, do red squiggly lines show up under misspelled words? If so, place your cursor over the word and right click. A list of suggested words will appear in the pop-up. Left click on the intended word to correct the spelling.
If you are using Internet Explorer, there is an add-in that will add spell checking capabilities. Here is some information about it:
http://www.speckie.com/home
It works with all versions of Windows and all versions of Internet Explorer.
Re: Newbie - Daughter of Patient
Hi Hiedi, sorry about your Dad. I would definitely recommend the Carfilzomib over the Velcade because of Peripheral Neuropathy problems with the Velcade. Believe me I know. I have to take powerful pain medication for the rest of my life because of Velcade. Also, the swelling in you Dads' feet cound be attributable to the Revlimid. It made my feet swell really bad causing me to take a diuretic. Hope this helps.
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GeorgeLJurak - Name: George Jurak
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Jan. 2011
- Age at diagnosis: 59
Re: Newbie - Daughter of Patient
Hi dear daughter
It is so wonderful that you are taking such an active part in your dad's treatment. It is VITALLY important to have a patient advocate to go through this journey.
My husband has multiple myeloma Stage 3 IgA that has relapsed. Started on Velcade March 2010. Built up resistance and started Revlimid Oct. 2010. He is now becoming resistant to that as well. We are going to try Velcade again. However, he is going to receive it subcutaneously (shot) instead of IV. He has significant neuropathy from Velcade in 2010. Clinical trials are showing less neuropathy with the shot. Might want to consider that instead!
It is so wonderful that you are taking such an active part in your dad's treatment. It is VITALLY important to have a patient advocate to go through this journey.
My husband has multiple myeloma Stage 3 IgA that has relapsed. Started on Velcade March 2010. Built up resistance and started Revlimid Oct. 2010. He is now becoming resistant to that as well. We are going to try Velcade again. However, he is going to receive it subcutaneously (shot) instead of IV. He has significant neuropathy from Velcade in 2010. Clinical trials are showing less neuropathy with the shot. Might want to consider that instead!
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TerriD
15 posts
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