My Father Has Mm, And We Received Bad News This Week

First, thanks for this forum.   I've been watching it since September of last year when my father was diagnosed with Stage III MM.    To be honest, I was a little bit afraid of this place, because some of the information was so frightening.   But now I know, this is a terrifying disease.  

My father had extensive lytic bone damage at that point, although it was a mystery to me as to why it seemed to develop so quickly.   A year before he had been so healthy and happy.  

He began a regimen of Velcade/Dex/Cyclophosphamide almost immediately after diagnosis and was declared to be in "near Complete Remission" in January.  He seemed to have a good response to the chemo with minimal side effects.   The only problem was that pain medication and three kyphoplasties were unable to resolve pain in his lumbar spine.   To this day, he still has it--he has it all the time.   But those of us who love him could even accept that in the short term knowing that maybe he was beating this hideous disease.

But abruptly his doctors began to not sound so rosey, and more and more to leave my parents twisting in the wind.   So, this week we learned that he has a "virulent" form of MM and has a genetic deletion:  the p53 genetic deletion, which confers a very poor prognosis.

The doctors originally told us that he would probably have at least five good years, but he hasn't had a good month, if you consider the pain.

He has handled this so courageous, as as my mother, the primary caregiver.   This week was just so depressing.   They told us he was doing well, and that he had achieved near complete remission, but I could tell from the way the doctors seem to "back away" that something wasn't right.  And this week we found out what it was.

The doctors are at least going to take a closer look at his back and see what they can do for the pain, and he is to begin a maintenance regimen of Revlimid and Dex.

Anyway, just had to share that--to introduce myself and thank you for listening, and to see if anyone has any thoughts about my father's case.

Thanks for listening,

Mike

Mike: I am so sorry re your Dad as I know how much pain he is in. I had those lesions on all my thoracic spine and part of the lumbar.  If you read the post before this one it will tell you some of the things I did. Supplements For Mgus/Mm? post

Not everyone has success I have had, but I have to be vigilent every day. I actually purchased those back heat wraps, they advertise for muscle and back pain, I kept one of every 24 hours, and changed it each morning. The package says only lasts a few hours but for me it worked that long. The heat did releive some of the pain. I, of course took Oxycontin and dilaudid, but that hardly touched it. The spine is the nerve center of the body so it does amplifiy the suffering. I sat in a chair half the day as I found it easier than lying down,  I hope the meds work for him. The natural supplement I took did help with the pain. I pray for his pain reduction and trust he can have some relief. We do understand how your family feels, It is terrifying to face your own mortality. take care MMS

On 4/4/2008 MCrow wrote:

First, thanks for this forum.   I've been watching it since September of last year when my father was diagnosed with Stage III MM.    To be honest, I was a little bit afraid of this place, because some of the information was so frightening.   But now I know, this is a terrifying disease.  

My father had extensive lytic bone damage at that point, although it was a mystery to me as to why it seemed to develop so quickly.   A year before he had been so healthy and happy.  

He began a regimen of Velcade/Dex/Cyclophosphamide almost immediately after diagnosis and was declared to be in "near Complete Remission" in January.  He seemed to have a good response to the chemo with minimal side effects.   The only problem was that pain medication and three kyphoplasties were unable to resolve pain in his lumbar spine.   To this day, he still has it--he has it all the time.   But those of us who love him could even accept that in the short term knowing that maybe he was beating this hideous disease.

But abruptly his doctors began to not sound so rosey, and more and more to leave my parents twisting in the wind.   So, this week we learned that he has a "virulent" form of MM and has a genetic deletion:  the p53 genetic deletion, which confers a very poor prognosis.

The doctors originally told us that he would probably have at least five good years, but he hasn't had a good month, if you consider the pain.

He has handled this so courageous, as as my mother, the primary caregiver.   This week was just so depressing.   They told us he was doing well, and that he had achieved near complete remission, but I could tell from the way the doctors seem to "back away" that something wasn't right.  And this week we found out what it was.

The doctors are at least going to take a closer look at his back and see what they can do for the pain, and he is to begin a maintenance regimen of Revlimid and Dex.

Anyway, just had to share that--to introduce myself and thank you for listening, and to see if anyone has any thoughts about my father's case.

Thanks for listening,

Mike

Mike, so sorry about your dad's misfortune. I too, am new to this board... read more than i post, although i'll probably be posting a lot more in the future. First off, i must tell you that this board is GREAT and full of smart, brave, knowledgable people. You can learn a lot here.

I dont know that i have anything to offer which might help, but my tale is a bit similar to yours, so i know the agony you are going through. My dad also has MM, diagnosed in October/November. He is also Stage III - had several lytic lesions and severe bone damage in his hip/pelvic areas. And when you say your dad still has terrible pain and no relief, my dad had the same thing. However, [upon diagnosis] it was also discoverd that he had a severe compression fracture of the spine, on top of all the other stuff. Common in Multiple Myeloma, from what i hear. His pain was excrutiating, and he had it ALL the time. Are you saying it's the same for your dad - all the time?  Even during and with treatments? From last September until now? (just trying to get the clear picture).  My dad was given Oxycodone (percoset), Celebrex (this was before the diagnosis, when he just thought he hurt his back) - and they all did nothing, zero. Then, when he was finally diagnosed, they put him in the hospital for 4 days, just to try to do something immediately about his pain. Pumped him full of steriods, morphene, dilaudid drip and everything under the sun - NOTHING. The doctors were shocked.

He came out of the hospital and soon began treatments... Velcade twice a week and Decadron steriods every other week. And also, Aredia once a month - has your dad gotten that as part of his treatment? It supposed to be for building up his bones. His pain medications were the Duragesic/Fentanyl Pain Patch, and Dilaudid pills. Still was in terrible pain, ALL the time. The only good thing that came out of this was, just a couple of weeks into treatment, they discovered that his cancer was responding to the treatments, 'beautifully' and his levels shot way down, almost back to normal. Re: the pain, after a short while, the doctor suggested/realized that his pain was more of a "structural" problem, she was pretty much right. His tumors/lesions were not only big, but he had severe bone damage and great loss of cartildge in his left hip. (there is a point to me telling you all this, sorry for going on). The worst part of his pain though was his back, obviously from the spine fracure. And the medicine did not help with that at all. It was a terrible first two months or so, but some time around 2nd or 3rd month, he was starting to get better {re: pain and mobility}. The excrutiating pain in the back was improving, and then diminished and slowly but shortly he could walk, sit and sleep much better. This could be attributed to several things, possibly the Aredia he gets once a month or other things, but i am POSITIVE that this main relief of pain was due to his spine fracture healing. I had taken him to an orthorpedic in the 3rd month, just to take a look at his scans, etc. We suspected he couldn't really do anything (and were right) but the ortho assured us that his spine fracture would heal on its own, and that is was already healing. He was right.  Does your dad have a spine fracture, along with the other stuff?  Did he get a bone scan upon diagnosis?

When my dad was first diagnosed, he was like a cripple, in excrutiating pain all the time, couldn't lie down flat or sleep in a bed and barely moved with a walker. Now, after about 5 months into it, he can move/walk much quicker, walks with just a cane and his pain is better. His hip still kills him, but there's really nothing that can be done about that -- almost all his cartilidge is gone. Back to the pain {your dad's pain} - where are the lesions? Are they -on- his spine? Or elsewhere? Also, has he seen an orthopedic? Do they have a Pain Management specialist at the place where he gets treatment? I have been told that sometimes it just a matter of getting the pain meds right, for each individual person. That they should keep tweaking it until they get something. There is one (unfortunately, only one) at the place where my dad goes, but we did not do well with him at all. It's like he was 'afraid' to give the medicines. But there are some that are great so it might help you to find one, a good one if you haven't already and keep persisting. This is what they do for a living.  I relate to your anguish about the no pain relief... even till this day, i still think (and my dad thinks) that the dilaudid and the patch do nothing for him, but who knows.

I'm sorry that i couldnt be of more help to your individual situation, except that i know what you are going through, and it is terrible. Also, since your bad news this week, did they say that he stopped responding to the treatments? And is your dad continuing? There are lots of wonderful people on this board, patients and caregivers who are more knowledgeable than myself so perhaps they will shed some light for you. Don't give up and just stay strong and remember to take a breath. We do the best we can. Take care and please keep us updated.

Deb Jr.

Thank you for the reply, but I'm very sorry that you know the pain this disease entails.  

 It must be awful.   Thank you for referring me to your other post.   I have been very interested in the topic of how to prevent MGUS from turning into SMM or MM.  

I know I should only be thinking of my father right now, but I'm also worried personally, because it looks like MM may run in my family.  I know that is rare, but there are some cases where it appears to be true.

This forum has been very helpful, and thanks again.

Mike

On 4/5/2008 DebJr wrote:

Mike, so sorry about your dad's misfortune. I too, am new to this board... read more than i post, although i'll probably be posting a lot more in the future. First off, i must tell you that this board is GREAT and full of smart, brave, knowledgable people. You can learn a lot here.

I dont know that i have anything to offer which might help, but my tale is a bit similar to yours, so i know the agony you are going through. My dad also has MM, diagnosed in October/November. He is also Stage III - had several lytic lesions and severe bone damage in his hip/pelvic areas. And when you say your dad still has terrible pain and no relief, my dad had the same thing. However, [upon diagnosis] it was also discoverd that he had a severe compression fracture of the spine, on top of all the other stuff. Common in Multiple Myeloma, from what i hear. His pain was excrutiating, and he had it ALL the time. Are you saying it's the same for your dad - all the time?  Even during and with treatments? From last September until now? (just trying to get the clear picture).  My dad was given Oxycodone (percoset), Celebrex (this was before the diagnosis, when he just thought he hurt his back) - and they all did nothing, zero. Then, when he was finally diagnosed, they put him in the hospital for 4 days, just to try to do something immediately about his pain. Pumped him full of steriods, morphene, dilaudid drip and everything under the sun - NOTHING. The doctors were shocked.

He came out of the hospital and soon began treatments... Velcade twice a week and Decadron steriods every other week. And also, Aredia once a month - has your dad gotten that as part of his treatment? It supposed to be for building up his bones. His pain medications were the Duragesic/Fentanyl Pain Patch, and Dilaudid pills. Still was in terrible pain, ALL the time. The only good thing that came out of this was, just a couple of weeks into treatment, they discovered that his cancer was responding to the treatments, 'beautifully' and his levels shot way down, almost back to normal. Re: the pain, after a short while, the doctor suggested/realized that his pain was more of a "structural" problem, she was pretty much right. His tumors/lesions were not only big, but he had severe bone damage and great loss of cartildge in his left hip. (there is a point to me telling you all this, sorry for going on). The worst part of his pain though was his back, obviously from the spine fracure. And the medicine did not help with that at all. It was a terrible first two months or so, but some time around 2nd or 3rd month, he was starting to get better {re: pain and mobility}. The excrutiating pain in the back was improving, and then diminished and slowly but shortly he could walk, sit and sleep much better. This could be attributed to several things, possibly the Aredia he gets once a month or other things, but i am POSITIVE that this main relief of pain was due to his spine fracture healing. I had taken him to an orthorpedic in the 3rd month, just to take a look at his scans, etc. We suspected he couldn't really do anything (and were right) but the ortho assured us that his spine fracture would heal on its own, and that is was already healing. He was right.  Does your dad have a spine fracture, along with the other stuff?  Did he get a bone scan upon diagnosis?

When my dad was first diagnosed, he was like a cripple, in excrutiating pain all the time, couldn't lie down flat or sleep in a bed and barely moved with a walker. Now, after about 5 months into it, he can move/walk much quicker, walks with just a cane and his pain is better. His hip still kills him, but there's really nothing that can be done about that -- almost all his cartilidge is gone. Back to the pain {your dad's pain} - where are the lesions? Are they -on- his spine? Or elsewhere? Also, has he seen an orthopedic? Do they have a Pain Management specialist at the place where he gets treatment? I have been told that sometimes it just a matter of getting the pain meds right, for each individual person. That they should keep tweaking it until they get something. There is one (unfortunately, only one) at the place where my dad goes, but we did not do well with him at all. It's like he was 'afraid' to give the medicines. But there are some that are great so it might help you to find one, a good one if you haven't already and keep persisting. This is what they do for a living.  I relate to your anguish about the no pain relief... even till this day, i still think (and my dad thinks) that the dilaudid and the patch do nothing for him, but who knows.

I'm sorry that i couldnt be of more help to your individual situation, except that i know what you are going through, and it is terrible. Also, since your bad news this week, did they say that he stopped responding to the treatments? And is your dad continuing? There are lots of wonderful people on this board, patients and caregivers who are more knowledgeable than myself so perhaps they will shed some light for you. Don't give up and just stay strong and remember to take a breath. We do the best we can. Take care and please keep us updated.

Deb Jr.

 

 

 

 

 

 

 

 

 

 

 

 

Thank you so much for this response, although I am so sorry about your father.   Your description of your experience with this tells me you know exactly what my father is going through.  

There is so much in your message that hits home I hardly know where to begin, but just so I don't forget, he is not a good candidate for the bisphosphonates due to renal damage, but perhaps at some time in the future they may consider this for him.

About the pain, I should have been more clear on this point.   He did get relief from his pain during his chemo, but I'm not quite sure what happened.   He told me that Celebrex helped him a lot, but he was advised to discontinue all NSAIDS because of his kidney issues.   But during treatment new lesions appeared on his low back, and I think those are the ones that are giving him so much pain.

I'm so happy to hear that your father has demonstrated a response to Velcade/Dex.    That seems to be wonderful and effective induction therapy for newly diagnosed patients, and I'm so happy that it received FDA approval.  My father was just lucky to be in a clinical trial for that combo+cyclophosphamide.

Please keep us posted about your father.   My heart goes out to both of you.

I found every word in your post helpful, so feel free to "run on" and never apologize!  

Thanks!!!!!!!!!!!!

Mike  

Just an update:

Friday the information got even worse, if you can believe it.

He not only has the 17p13 and p53 deletion, but the dreaded p13 deletion and the t(4;14) translocation.

Not to make light of this, but he might make scientific history, as I've read it is almost unknown for an MM patient to have both a p53 deletion and a t(4;14).

God...  His situation couldn't be worse.   I've been writing to experts on MM I respect to get their opinions about how to treat high risk myeloma, and they seem to agree that Rev/Dex is the best maintenance therapy following Velcade/Dex.

Hi Mike,

My father too was diagnosed with Stage lll MM.  His regular PCP found something in his physical routine blood work in Aug 07.  It was only weeks later the back pain started, he thought he pulled a muscle but he fractured a vertabrae, another followed in a few weeks.  Anemia became a reacurring problem along with failing Kidney functions.  It was not until the end of Jan 08 that they diagnosed him with stage III MM.  He was put on the Rev/Dex 25mg 3x week.  It only 2 weeks for the Blood clots to form in his lungs.  They were constantly changning his Coumadin prescription to get is blood  normal.  3 weeks later he formed more Blood clots in his legs.  He now gets Lovenox inj  twice a day from my mom.  We have learned that the Hospital emergency rooms do not know alot about Revelimid.  When the clots formed in my dad's lungs and they rushed him to the hospital my mom told them about the blood clot side effect of Revlimid.  The doctor told them that he would not have clots in his lungs and that they would have to start in his legs.  We finally got a doctor who listened to my mom.  He could have sufficated if no one listened.  Please make sure that any care giver read all the side effects of this drug.  They have since changed him to Revlimid 15mg/Dex.  The pharmacists say they were showing just as good results at the lower strength.  He goes to see the oncologis at the end of the month, the doctor said that having been on the drug for 2 months they should know if it is working. 

I don't write much on this site, but have found that following all the conversations has enlightened my family to know what kind of questions to ask when going to the doctor.  It has been very educational.  I apprecaite everyones imput.

Sue

Hi Mike and Deb --

I have now had stage III MM for 5 years with bone lesions on every bone in my body including my skull and crush fractures in my spine which have reduced my height by 3 inches. The bone pain is one of my biggest problems and it has taken the entire 5 years to finally get my pain medication 'right'!!  I am no longer concerned about people thinking I am an addict because I am on so much morphine, but the amount that I am taking works on the pain and allows me 4 hours of active hours per day!  The medication has gradually increased over the years in conjunction with working on getting my bowels working properly and not being constipated.  I use the durgesic patches and have gone from 25mg to 300mg every 48 hours as well as using Ordine 10 as a breakthrough medication - but please remember that this increase happened over a 5 year period!!.  I have learned that using this medication does not make me 'high' but does stop the intense bone pain.  If I have to do 'extra' I take the Ordine BEFORE I need it so that I don't end up in agony.  This system works for me.  On top of this medication I have had radiotherapy to my spine on the crush fractures and both my femurs to reduce the intense pain.  I was on Aridia for over 2 years, but after reading a lot on osteonecrosis of the jaw I decided that the risk was too great so I stopped the Aridia.  Funnily enough, I was hit by a car while crossing the street when  I was on the Aridia and although I have holes in all my bones NOTHING was broken!  My doctor said that I should be the cover girl for the Aridia company -- for every bone in my body should have broken - proving that the Aridia really does strengthen your bones!!  I can truly appreciate the bone pain facing your father -- I live with it every day, but now that I'm on Revlimid in conjunction with the 300mg patches my world has become much more livable!  I am currently going through my by-annual skeletal survey and sistamibi nuclear x-rays which should show just how much more damage there has been in the last 6 months, but going by how I am feeling I believe that although I am far from 'cured' I am certainly stable and the progress of the MM has been seriously slowed over the past 21 months!  I just pray that the Revlimid continues working so well for me.

I hope that my information regarding pain medication is of help to you -- remember that the patches can be increased in 25mg increments over time until they 'do' work for the patient.  I stayed at 225mg  for many months, then went to 250 for about 8 months before going up once more a couple of months ago.  And they can be changed every 48 hours instead of 72 hours if necessary.  Its about what works for YOU -- don't fear being an addict.  I asked my oncologist what would happen at the 'end' -- if I'd been on high doses for months before that time would the morphine still work if the pain increased at the time of my death.  He said that it was very rare for a MM patient to die in extreme pain as the medication can be managed up until the end regardless of how much they had been on prior to that time. (I had been watching a lot of TV movies which depicted cancer patients dying in agony and I was quite worried)  He said that if worse came to worse the doctor can actually sedate the patient if noting else stops the pain, but he said that this rarely happened.  It is essential that the patient discuss their wishes with the doctor and the nursing staff caring for them to ensure that their wishes are fulfilled.  He said that many nurses do not understand how pain meds actually work for cancer patients and are reluctant to give what has been prescribed when the patient is in hospital.  I actually experienced this recently when I was hospitalised with a kidney stone.  The nursing staff were reluctant to give me the morphine that I needed to kill the pain, and then after the operation to put in the stent when I asked for 20mls of Ordine 10 the nurse actually called the pharmacist at 2:00am to get approval to give it to me -- even though it was written on my chart.  Four hours later she came into my room and said "you are allright" to which I responded, "and why shouldn't I be?".  She said that she felt that she had been giving me an overdose even though it had been checked and double checked, and I just looked at her saying " do I look like an addict to you?".  She came back later before leaving for the day and said that she had learned a lot about the effects of morphine on cancer patients!!  My oncologist says that this is a really big problem with the nursing staff everywhere.  Oh well, hopefully they will learn in the not too distant future!

I'm going on and on and that was not what I meant to do.  Good luck to you both in your search for pain medications -- it does take time but perservere and you will get there.  The first step is to realise that by taking pain meds you are not 'giving in' but actually improving the quality of your life.  The old addage 'Use it or Lose it" is very true, but if you are in too much pain to walk how can you get out and do any exercise??  By having the pain meds you gain quality of life -- thats my most important message.  And know that there will still be medication to help you at the end if the pain becomes even more profound.  My thoughts and prayers are with you both -- I know where you are and how you are travelling -- its not easy but is possible!!  Take good care, love to you and your caring families,  Cath