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New here - father has myeloma

by eldest_daughter on Wed Jan 15, 2014 2:57 am

Hello everyone! I am new here. I am a daughter of a multiple myloma survivor. My father was diagnosed with multiple myeloma last 2011, he's 59 at that time. It was indeed one of the most trying times of our lives. Being the eldest, I assumed I was expected to stay strong and it wasn't very easy for me most of the times cause I am usually and normally a "worrier".

My dad was bedridden for a couple of months. The doctor gave us Zometa because that is the "cheapest" he could prescribe. And Zometa really did help. Eventually my dad was up on his feet and was able to do usual things like bathe himself and go to the bathroom, etc. He started doing regular but light exercises such as walking around the block to keep his muscles strong.

We were off the Zometa since March last year and according to his blood tests last December, the cancer cells are inactive.

BUT...

Just before New Year, my dad complained of pain on his back and on his shoulders. It started when he dropped the TV remote under the bed. He said he steadied himself onto his left arm and used his right arm to reach under the bed. He tried to reach for the remote and when he did, he suddenly felt pain on his left shoulders/arm socket (the one he used to steady himself with).

We went to the doctor and eventually found out that he had fractures. The doctor said probably due the reaching incident. So the doctor put us back on Zometa for faster healing of fractures.

Zometa was administered to him last january 10. He was also given Dolcet [Ultracet; tramadol+acetaminophen/paracetamol] for pain. Then today, my dad called me to tell me he couldn't get up from bed! :( He said he couldn't stand up. Seems like his legs couldn't carry his weight. and he also couldn't text on the phone because he said he has poor grip and the phone kept on slipping from his hands.

I know i should go to the doctor and i am going tomorrow. But i was looking online for possible causes or for similar situations. And that's how i found this site. I am starting to panic and to feel stressed out. I am very much aware that multiple myeloma has a very high chance of remission. I guess i'm just looking for support. Has anyone else have the same experience?

Will wait for replies. Thanks so much ...

eldest_daughter
Who do you know with myeloma?: father
When were you/they diagnosed?: 2010

Re: New here - father has myeloma

by dnalex on Wed Jan 15, 2014 4:21 am

Hello,

I'm sorry that your father is not doing well, and I hope for a turn around.

I do have several comments. Firstly, if he cannot get out of bed etc., then I think that you should head straight to the ER.

Secondly, I am really very puzzled about the treatment so far. While Zometa does have some anti-myeloma activity, I don't think that it is used as a primary treatment modality. Has your father been seeing a myeloma specialist?

Best wishes,
Alex

dnalex
Name: Alex N.
Who do you know with myeloma?: mother
When were you/they diagnosed?: 2007
Age at diagnosis: 56

Re: New here - father has myeloma

by terryl1 on Wed Jan 15, 2014 6:10 am

Hi, Echoing what Alex said, was there another treatment concurrently given with the Zometa? I would also hope he is being seen by a myeloma expert, not just a general oncologist. Sounds like he needs a full work up and to be seen immediately. Good luck.

terryl1
Name: Terry
Who do you know with myeloma?: self
When were you/they diagnosed?: August 10, 2011
Age at diagnosis: 49

Re: New here - father has myeloma

by eldest_daughter on Wed Jan 15, 2014 10:16 am

Thank you for your replies. We are seeing an oncologist. We were given oral chemo. I don't remember the medicine. I think it was prednisone and one other drug. And we did radiation. We did Zometa once a month for almost a year. Then we stopped and we're off of it for about almost a year too. If not for the fractures, we won't be resuming Zometa.

I don't know if there are myeloma specialist from where I am. Finance is sort of an issue. We used to see a hematologist and she recommended Velcade which we could not afford. Then we were referred to our present doctor.

I just checked on my dad and he said he seemed to have improved by late afternoon. I texted my doctor and he's ordering a test of ionized calcium.

I am praying this is just some form of potassium defeciency or something. I hope things are better tomorrow morning. Thank you again for your replies. It means a lot ...

eldest_daughter
Who do you know with myeloma?: father
When were you/they diagnosed?: 2010

Re: New here - father has myeloma

by Multibilly on Wed Jan 15, 2014 1:57 pm

Hi Eldest Daughter,

I thought there might be a financial concern from your first post. There is a good summary of resources that Nancy mentions here that can help your Dad out with the costs of the multiple myeloma drugs. Many folks on this forum use one or more of these services.

https://myelomabeacon.org/forum/frustrated-any-advice-about-medicaid-t2520.html#p13480

Note that seeing an "oncologist" is not necessarily the same as seeing a "myeloma specialist". Many oncologists just aren't that up-to-speed on the nuances of multiple myeloma. As Terry mentioned, I also would really suggest a full lab workup for multiple myeloma, not just a calcium level test. This would include the tests outlined here:

https://myeloma.org/ArticlePage.action?tabId=1&menuId=322&articleId=3177&aTab=-1

Multibilly
Name: Multibilly
Who do you know with myeloma?: Me
When were you/they diagnosed?: Smoldering, Nov, 2012

Re: New here - father has myeloma

by eldest_daughter on Wed Jan 15, 2014 9:16 pm

Hello Multibilly! That was very helpful information. The test we did last december was the SPEP and some other blood tests. I will try and do more research about myeloma specialists here. Im from the Philippines by the way...

I guess the cancer caught us off guard (I dont think anyone is prepared for it..) and for a moment we seriously didn't know what to do? Specially when the doctor prescribed us meds that we couldn't afford. So we were eager to get any help we could. And that was when a friend referred us to this doctor we're seeing now. He did get my dad up on his feet so I am very confident with him. But having read these information really got me thinking.

eldest_daughter
Who do you know with myeloma?: father
When were you/they diagnosed?: 2010

Re: New here - father has myeloma

by tpt on Tue Feb 18, 2014 12:12 pm

Hi there...

I can understand your situation. I am from Indonesia, and my father was diagnosed with multiple myeloma back in 2011.

You're quite lucky that your doctor even mentioned Velcade. Doctors in Indo didn't even know what Velcade was; they only knew thalidomide. We had no choice but to go to Singapore to see an multiple myeloma specialist.

Velcade is indeed very expensive. We pay about 1500 SGD (1 SGD ~ 0.85 USD) per injection at a Singaporean hospital. So this translates into a lot of money during our induction therapies (so-called induction therapy is where combinations of novel drugs like Velcade and Thalidomide is administered on a cycle basis, where for Velcade, 1 cycle is usually 1 injection per week for one month).

My doctor told me that when our finance couldn't take it anymore (as we don't have insurance) we should look for the "fake" version of Velcade, made in India. This is certainly not the Velcade made by Janssen-Cilag, but made by some other pharma companies. The doctor said that it works... It probably does not cost Janssen-Cilag that much to make the drug (i.e. cheap ingredients), but the initial research and development phase of Velcade must be very expensive, in addition to the profit they need to make as a company--hence the expensive cost of the drug. I believe these fake Velcades are similar to the regular Velcades, but without the license from Janssen-Cilag (obviously). It costs about one-fifth of the original Velcade.

I did not ask where could I find it, as I didn't want to risk myself over the drug's ingredients (and still hanging there for the cost of the drugs though my Dad's no longer working... it's very hard... but I don't want to discourage you and crowd your head by talking about my struggles with financial issues and giving up some of our dreams); but maybe your doctor can tell you should you need it. I wouldn't recommend you anything, and this is solely just for your information.

I have a feeling that your doctor knows what he/she is doing. Predisone (cheap steroids) does have anti myeloma effect. Perhaps the other drug is called Thalidomide (it's also a relatively cheap drug)?

The number of multiple myeloma diagnosis as well as the number of multiple myeloma patients around the world is very well understimated. This cancer is very hard to diagnose, and it is also a very expensive disease. Many doctors in developing nations (China, India, Indonesia) don't know much about this disease. My Dad was mistakenly thought of having bone tubercolosis and disc degenerative by three (not one, but three) different orthopaedics.

I wish you well. Be strong.

tpt

Re: New here - father has myeloma

by Veterans daughter on Thu Mar 06, 2014 10:36 pm

I am so sorry to hear about your father. My father was diagnosed in 2008 and passed away in 2011. What you are describing sounds like neuropathy. My father used to get that all the time. The doctor gave us a home remedy it was white raisins soaked in gin for a couple days. My father would eat just a handful of them and it really seemed to help.

Veterans daughter


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