My father was diagnosed with multiple myeloma in March. He had 90% involvement (bone marrow plasma cell percentage) and an IgG over 8000 mg/dl (8 g/dL, 80 g/l). His kidneys nearly failed with a creatinine of 4.8. He was admitted to the hospital with pneumonia before he started treatment. At the time, he lost the ability to control his bladder, was in too much pain to raise himself up, and his blood counts bottomed out.
It was all a big shock and I thought there was no way he would ever bounce back, or even live. He was doing farm and carpentry work for 30 years all the way up to three months before his diagnosis and declined so fast from the pain.
Well, after a week in the hospital, 10 radiations, and a couple months of Velcade and dex, his IgG was cut in half, his blood counts greatly improved, and he was fully mobile again. His kidneys took no damage and creatinine dropped to 1.0. With the addition of Revlimid, his bone marrow biopsy showed 10 percent 2 months ago and he had what looked like a great response and we were looking forward to an almost certain remission.
Jump to 2 months ago, he started having really bad diarrhea, which was blamed on the Revlimid. He soldiered on and kept taking it til a month ago he starting having almost 24/7 nausea, shortness of breath, and feeling weak with no energy. His blood work showed that his hemoglobin dropped from about 11 to 7.5. His platelets were low too. The onco blamed it on the treatment, saying since his creatinine crept up a few tenths that he was likely dehydrated and the medicine had a more profound affect. He was taken off all treatment except for 16 mg of dex once a week.
A month later, he's still having to have transfusions and blood refuses to build even with Procrit shots. His platelets keep bottoming out to 1000 and he has had nose and gum bleeds with it and many units of platelets transfused. He is also having some back pain, though not as severe or debilitating as it was before treatment. He has mostly sat or laid around for 2 months as well, which could explain some of the back problems. His doc was dumbfounded and had a bone marrow biopsy repeated yesterday "just to see if it's the myeloma" and was finding it hard to believe it was.
So here I am, his primary caretaker, a very young one at that with 0 experience in taking care of anyone, especially on a level like this, and back to sleepless nights, tending to his every need, letting my whole life fall to the wayside, just like pre diagnosis. I can't believe we are back in this shape after only 6 months when he was () close to a remission or near remission. Aside from weekly visits for treatments, our lives had returned to normal.
I have no idea what the h**l is going on and it makes no sense. I'm so angry and so scared, and most of all, so tired. He has gone from caring for himself completely to hardly not at all in a matter of days. I am out of resources, out of energy, and out of faith at this point.
He's also developed a great deal of confusion the past 2 days. He says things that don't make sense and doesn't understand things when I tell him. 2 days ago, 100 percent in his right mind, today, maybe 40. Again, nothing explains this symptom either.
Can anyone shed some insight on any of this? I've never heard of this happening in myeloma treatment, especially when the patient responds so well.
I actually went a few months without thinking my dad won't be here for long and now I have no idea what to think. I don't know what the biopsy can show except bad news, as I see nothing else, not even the treatment, causing all this. I just plain don't understand. It's like everything was working until it stopped abruptly.
For clarification, he started out with twice weekly Velcade shots, monthly Zometa, Aranesp when needed, 40 mg dex weekly, and 10 mg Revlimid 14 days on and 7 off.
He got whittled down to 16 mg dex weekly, weekly Velcade at a lower dose with one week off a month, Revlimid stayed the same, and hardly needed Aranesp.
He's 65, healthy, except a heart arrrthymia (not atrial fibrillation) that's well controlled. Started having pain about a year ago and the kidney problem came around December. Diagnosed in March and started treatment in March.
If anyone could shed some insight I would so appreciate it. All I can do is cry.
Forums
Re: Induction working great, then suddenly stopped working
Dear you!
I feel terribly sorry for you and your father.
Do you get the support from the hospital and do you and your father receive professional support?
Are you in close contact with a real myeloma specialist?
It seem that you need much more support and better information.
You can and should insist being connected to a hospital department specialized in myeloma!
Yours sincerely
Lev
I feel terribly sorry for you and your father.
Do you get the support from the hospital and do you and your father receive professional support?
Are you in close contact with a real myeloma specialist?
It seem that you need much more support and better information.
You can and should insist being connected to a hospital department specialized in myeloma!
Yours sincerely
Lev
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Lev - Name: Lev
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: June 2014
- Age at diagnosis: 57
Re: Induction working great, then suddenly stopped working
Thank you for the reply. He just sees a normal oncologist, though a very good one. There are no myeloma specialists in our area and we already have to drive an hour away as it is just to see an oncologist. The staff at the cancer center has been amazing, but sadly none of them can come home with me to do the day-to-day caregiving.
I'm only in my 20s and this fell on us like a ton of bricks. Dad has Medicare and Medicaid but doesn't qualify for any home health and we definitely do not have the income or the time to seek any other means of support. We just barely get by, which was fine when he got better and was self sufficient again.
This past winter were the hardest months of my life and I don't know how we made it. I'm just disgusted this is happening now because we went through so much to get here and it doesn't make sense. I know all about relapse and about lack of response, but I never imagined someone would respond VERY well then suddenly stop. I don't understand where the sudden confusion comes from either.
I'm only in my 20s and this fell on us like a ton of bricks. Dad has Medicare and Medicaid but doesn't qualify for any home health and we definitely do not have the income or the time to seek any other means of support. We just barely get by, which was fine when he got better and was self sufficient again.
This past winter were the hardest months of my life and I don't know how we made it. I'm just disgusted this is happening now because we went through so much to get here and it doesn't make sense. I know all about relapse and about lack of response, but I never imagined someone would respond VERY well then suddenly stop. I don't understand where the sudden confusion comes from either.
Re: Induction working great, then suddenly stopped working
Hello Newtothis,
I'm really sorry to hear about the challenges you and your father have been experiencing lately.
The confusion your father has been experiencing lately could be the result of his myeloma returning. It's also possible, however, that the problems he was having with his digestion disrupted his electrolyte levels, and that also can cause the sort of confusion you've described.
See these forum discussions for more on this topic:
"Delirium may be returning" (started Sep 23, 2015)
"Husband newly diagnosed after suffering delirium" (started June 28, 2013)
It seems like your father responded best to the combination of Velcade, Revlimid, and dex, and started to have problems when he could no longer tolerate the usual dose of Revlimid. So it's really going to require some careful thinking, and perhaps some experimentation, to find some way to either get him back on the regimen he was on before, or find some alternative regimen that gets his treatment back on track.
This is why I also would recommend trying to arrange for your father to see a myeloma specialist as soon as possible, or to have his case reviewed by a myeloma specialist as soon as possible. His case is complicated enough that it really requires the attention of someone who sees lots of myeloma cases on a regular basis.
If you give us an idea of where you are located, I'm sure we can come up with some suggestions for myeloma treatment centers that are not too far away from you. Some centers nowadays also make it possible for a patient's local doctor to arrange for a "teleconsult". I believe the Mayo Clinic and Dana-Farber offer such an option.
Please keep us posted as you find out more information about what is happening with your father, and we'll do what we can to help. Also, be sure to keep reading and reviewing postings here in the forum. I've been doing it for years, and I still learn something about multiple myeloma everyday.
Good luck!
I'm really sorry to hear about the challenges you and your father have been experiencing lately.
The confusion your father has been experiencing lately could be the result of his myeloma returning. It's also possible, however, that the problems he was having with his digestion disrupted his electrolyte levels, and that also can cause the sort of confusion you've described.
See these forum discussions for more on this topic:
"Delirium may be returning" (started Sep 23, 2015)
"Husband newly diagnosed after suffering delirium" (started June 28, 2013)
It seems like your father responded best to the combination of Velcade, Revlimid, and dex, and started to have problems when he could no longer tolerate the usual dose of Revlimid. So it's really going to require some careful thinking, and perhaps some experimentation, to find some way to either get him back on the regimen he was on before, or find some alternative regimen that gets his treatment back on track.
This is why I also would recommend trying to arrange for your father to see a myeloma specialist as soon as possible, or to have his case reviewed by a myeloma specialist as soon as possible. His case is complicated enough that it really requires the attention of someone who sees lots of myeloma cases on a regular basis.
If you give us an idea of where you are located, I'm sure we can come up with some suggestions for myeloma treatment centers that are not too far away from you. Some centers nowadays also make it possible for a patient's local doctor to arrange for a "teleconsult". I believe the Mayo Clinic and Dana-Farber offer such an option.
Please keep us posted as you find out more information about what is happening with your father, and we'll do what we can to help. Also, be sure to keep reading and reviewing postings here in the forum. I've been doing it for years, and I still learn something about multiple myeloma everyday.
Good luck!
Re: Induction working great, then suddenly stopped working
The nearest myeloma specialist is 3 hours from me. I have no job and we are of little means, further travel is out of the question. I am blessed with an amazing fiancé who helps me as much as possible, but he works full time 5 days a week. Taking dad to and from treatment is something I have to do on my own. It's very hard for me to manage and I do the best I can with what I have.
I do have some family nearby, but they either work or simply do not offer or want to take part in helping me with day-to-day tasks. It's very isolating and I feel a lot of resentment for having all this laid in my lap when dad has so many people who love him but yet won't step up to the plate to really help him. That's another story for another day, however.
As for the confusion, it could be dietary, but not from the diarrhea as that resolved weeks ago. Also, the blood counts dropped even while on the treatment, including Revlimid. Revlimid was causing him a lot of stomach issues, but he continued taking it for several weeks anyway. He literally started going the other way spontaneously while on the same exact treatment that had gotten him so well.
If the confusion is myeloma-related, why would it come up overnight? He was fine Sunday and starting Monday he was having issues. I assume it might be blood related, as his hemoglobin and platelets have been so low for a few weeks. He also had a bleeding issues over the weekend due to the low platelets. It wasn't an enormous amount of blood loss, but his nose bled a little on and off as well as his gums. After having a unit of platelets Monday and Tuesday (this time so that he could safely have a bone marrow draw) ,the bleeding hasn't returned.
He's doing a tad better otherwise and is a little more mobile today. His appetite has increased a little too and his pain isn't too bad, despite hardly taking any pain medicines. I can't understand the confusion unless it's a deficiency of some sort due to low blood counts.
Part of me is saying that "it's not the myeloma, it's the treatment suppressing his blood counts, he will bounce back from this." The other part of me is saying "it's the myeloma ... the treatment quit working and there is nothing they can do, I will lose him this time" I hate my life lately. I hate this whole thing. I'm am definitely without the wisdom or the faith or the heart to be able to handle this. I really hoped that he had a few years left with me since his treatment worked so well. Now I don't know anymore.
I do have some family nearby, but they either work or simply do not offer or want to take part in helping me with day-to-day tasks. It's very isolating and I feel a lot of resentment for having all this laid in my lap when dad has so many people who love him but yet won't step up to the plate to really help him. That's another story for another day, however.
As for the confusion, it could be dietary, but not from the diarrhea as that resolved weeks ago. Also, the blood counts dropped even while on the treatment, including Revlimid. Revlimid was causing him a lot of stomach issues, but he continued taking it for several weeks anyway. He literally started going the other way spontaneously while on the same exact treatment that had gotten him so well.
If the confusion is myeloma-related, why would it come up overnight? He was fine Sunday and starting Monday he was having issues. I assume it might be blood related, as his hemoglobin and platelets have been so low for a few weeks. He also had a bleeding issues over the weekend due to the low platelets. It wasn't an enormous amount of blood loss, but his nose bled a little on and off as well as his gums. After having a unit of platelets Monday and Tuesday (this time so that he could safely have a bone marrow draw) ,the bleeding hasn't returned.
He's doing a tad better otherwise and is a little more mobile today. His appetite has increased a little too and his pain isn't too bad, despite hardly taking any pain medicines. I can't understand the confusion unless it's a deficiency of some sort due to low blood counts.
Part of me is saying that "it's not the myeloma, it's the treatment suppressing his blood counts, he will bounce back from this." The other part of me is saying "it's the myeloma ... the treatment quit working and there is nothing they can do, I will lose him this time" I hate my life lately. I hate this whole thing. I'm am definitely without the wisdom or the faith or the heart to be able to handle this. I really hoped that he had a few years left with me since his treatment worked so well. Now I don't know anymore.
Re: Induction working great, then suddenly stopped working
Hello New:
I see you have done a tremendous job so far in dealing with a very difficult situation. Maybe it's the case that you have more experience with dealing with these tough situations than myself, and other readers / contributors. But I will add the following.
It is clear that your father does not have "plain vanilla" myeloma. For plain vanilla multiple myeloma, there are several dozen readers here who can give you the "standard of care", and it would work reasonably well. I think you mentioned that your dad has Medicare / Medicaid. If you can swing it, you want to get input from someone who does this "full time", due to your father's issues. The specialists are the one who can "mix and match" or "wheel and deal" to get a good result (pick your cliché), much better than someone who does it part time and is very good with a standard case, but does not have a lot of experience with the more complicated cases.
I think that although your father has had a type of failure with first round treatment, it does occur frequently that the second-line treatment works. From reading the literature, my non-medical professional opinion is to try carfilzomib (Kyprolis). In fact, there are several options after that.
In short, you have done a fantastic job so far, and its too early to give up. Getting a full time multiple myeloma specialist on board, I think, will give you all the best chance of hitting back at this unfortunate situation.
Good luck, JPC
I see you have done a tremendous job so far in dealing with a very difficult situation. Maybe it's the case that you have more experience with dealing with these tough situations than myself, and other readers / contributors. But I will add the following.
It is clear that your father does not have "plain vanilla" myeloma. For plain vanilla multiple myeloma, there are several dozen readers here who can give you the "standard of care", and it would work reasonably well. I think you mentioned that your dad has Medicare / Medicaid. If you can swing it, you want to get input from someone who does this "full time", due to your father's issues. The specialists are the one who can "mix and match" or "wheel and deal" to get a good result (pick your cliché), much better than someone who does it part time and is very good with a standard case, but does not have a lot of experience with the more complicated cases.
I think that although your father has had a type of failure with first round treatment, it does occur frequently that the second-line treatment works. From reading the literature, my non-medical professional opinion is to try carfilzomib (Kyprolis). In fact, there are several options after that.
In short, you have done a fantastic job so far, and its too early to give up. Getting a full time multiple myeloma specialist on board, I think, will give you all the best chance of hitting back at this unfortunate situation.
Good luck, JPC
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JPC - Name: JPC
Re: Induction working great, then suddenly stopped working
Hi there
I'm sorry to hear of your struggles and current despair. It does sound as though you have "had it", yet you still need to carry on. It's a hard place to be.
You have received some sound advice from people, and I just wanted to add a thought re the confusion you say your father is suddenly experiencing.
Cheryl mentioned electrolyte imbalance. It could also be worth checking whether or not, in his current state, your father has developed a UTI (urinary tract infection). An undetected UTI can bring on distinct confusion very quickly, so much so, that caregivers can think that their family member has suddenly developed dementia. When the UTI is treated, the confusion ceases. Your GP (general practitioner) can do a urinary test for a possible UTI.
Of course, dex, and withdrawal from dex can also produce a build up of confusing thoughts for some people, though your father is currently on a low dex dose. I agree with suggestions that the treatment regime needs to be "played with", and a multiple myeloma specialist needs to be consulted. Multiple myeloma specialists will often respond to emails directly from patients or caregivers.
My thoughts are with you and your father.
Karen
I'm sorry to hear of your struggles and current despair. It does sound as though you have "had it", yet you still need to carry on. It's a hard place to be.
You have received some sound advice from people, and I just wanted to add a thought re the confusion you say your father is suddenly experiencing.
Cheryl mentioned electrolyte imbalance. It could also be worth checking whether or not, in his current state, your father has developed a UTI (urinary tract infection). An undetected UTI can bring on distinct confusion very quickly, so much so, that caregivers can think that their family member has suddenly developed dementia. When the UTI is treated, the confusion ceases. Your GP (general practitioner) can do a urinary test for a possible UTI.
Of course, dex, and withdrawal from dex can also produce a build up of confusing thoughts for some people, though your father is currently on a low dex dose. I agree with suggestions that the treatment regime needs to be "played with", and a multiple myeloma specialist needs to be consulted. Multiple myeloma specialists will often respond to emails directly from patients or caregivers.
My thoughts are with you and your father.
Karen
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kfrewin
Re: Induction working great, then suddenly stopped working
Thank you all for the replies. He got admitted to the hospital today because he needed more blood and platelets and they want to check the confusion out. Here we are right back where we started. I'm so out of heart. I just know it's going to be awful news. No way can we bounce back like we did the first time. It's just a feeling. God help me.
Re: Induction working great, then suddenly stopped working
Dear Newtothis
I had a similar failure during induction with with Revlimid. In my case, Revlimid with dexamethasone worked initially. The blood tests used to determine the myeloma level in my body started to show substantial improvement, my blood cell counts improved, and I started to feel better. Then, in a matter of weeks, it all stopped working, and I was back where I had started from.
All of this was very discouraging. The next drug tried was Velcade, and that did nothing, unfortunately.
But the third one, Kyprolis (carfilzomib) worked, and seems to be continuing to work.
This kind of scenario is not common, but it does happen, as JPC said.
As others have suggested, I very strongly urge you to find a myeloma specialist. Medicare will cover the medical costs, so what you will need is help with the travel expenses. I would suggest you have a meeting with your family about getting some assistance financially. Failing that, perhaps you can find a myeloma specialist who will work with your oncologist through sharing test results without having to see your dad.
I want to reinforce what others have said about the amazing job you have done so far, and to tell you that there is a very, very good possibility that this is just a setback and that your dad can recover again.
Please do not lose hope. People can come back from this. If you can share where you are located, members on this site can offer suggestions on where to find a myeloma expert. That is what your father needs right now.
My prayers and best wishes are with you and your father.
I had a similar failure during induction with with Revlimid. In my case, Revlimid with dexamethasone worked initially. The blood tests used to determine the myeloma level in my body started to show substantial improvement, my blood cell counts improved, and I started to feel better. Then, in a matter of weeks, it all stopped working, and I was back where I had started from.
All of this was very discouraging. The next drug tried was Velcade, and that did nothing, unfortunately.
But the third one, Kyprolis (carfilzomib) worked, and seems to be continuing to work.
This kind of scenario is not common, but it does happen, as JPC said.
As others have suggested, I very strongly urge you to find a myeloma specialist. Medicare will cover the medical costs, so what you will need is help with the travel expenses. I would suggest you have a meeting with your family about getting some assistance financially. Failing that, perhaps you can find a myeloma specialist who will work with your oncologist through sharing test results without having to see your dad.
I want to reinforce what others have said about the amazing job you have done so far, and to tell you that there is a very, very good possibility that this is just a setback and that your dad can recover again.
Please do not lose hope. People can come back from this. If you can share where you are located, members on this site can offer suggestions on where to find a myeloma expert. That is what your father needs right now.
My prayers and best wishes are with you and your father.
Last edited by MrPotatohead on Sat Oct 03, 2015 7:17 pm, edited 1 time in total.
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MrPotatohead - Name: MrPotatohead
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: March, 2015
- Age at diagnosis: 65
Re: Induction working great, then suddenly stopped working
Hi there. I feel your pain, as going through similar situation with my mom, who was diagnosed in 2012. Initial treatment was Velcade, which she had excellent response to and went into remission 5 months later. 1.5 years later it came back and she was treated with Revlimid, which was not readily available at the time in our country, so we had to wait almost 4 months for it. This stopped working in June and mom went on aggressive chemo. She could not start alternative meds until her blood count normalized. We were able to get her on pomalidomide, again not funded. Unfortunately she has been taken off this too due to low blood counts and has had multiple transfusions. She is extremely tired with no energy.
Not sure what the options are now and I have days where I feel lost and extremely sad. Then others day I remain hopeful and my faith gets me through. She has been looked after in the past, pulling through extremely difficult situations miraculously.
Don't lose hope and have faith. Research and do what you can to understand all the options. All the very best
Not sure what the options are now and I have days where I feel lost and extremely sad. Then others day I remain hopeful and my faith gets me through. She has been looked after in the past, pulling through extremely difficult situations miraculously.
Don't lose hope and have faith. Research and do what you can to understand all the options. All the very best
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