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Myeloma...what to expect?
Hi! I am Lisa. My daddy was diagnosed with multiple myeloma in 2006. Daddy is now 83yr old, my mom 80yr old. I wont go into details, except to say it has only been in the last year that we have really noticed a huge decline in his health. He is now on oxygen, steroids and blood thinner meds. I decided to do my own research on this disease...! We were never told about Stages of Multiple Myeloma, the progression of symptoms to look for. Now it may be too late for my dad. I have read your members stories...daddy is in his "final stages" I believe. He "dozes", as he says, throughout the day, (I call it sleeping). short of breath from out of the blue, no appetite, doesn't call me EVERY nite like he always does. one huge thing....his feet. the bottoms of them are extremely painful!!!!! they are bright red, not hot though. his Dr. gives us no answer. We have a physical therapist come in 3 times a week and a home care nurse who comes 2x a week. NO ONE shows any concern. I have read your members stories...and found so much peace. I guess knowing my family isn't alone. I never realized that other families/individuals suffer with this. Im angry that I wasn't more proactive. That I trusted our oncology Dr. that I didn't ask questions. University of TN Medical Ctr is a respected teaching hospital. I could go on. My membership into this website is purely selfish. I just want to read your stories. To give me insight into what my dad and my mom are going thru. They have been together over 60yrs. and I want to gather the wisdom from those of you suffering....be it the person diagnosed or the loved ones learning how to say goodbye. Dad is at peace with the Lord for which I am grateful..What is down the road. I welcome your honesty...please! I need it.
Re: Myeloma...what to expect?
Hi Lisa,
So sorry to hear about what you Daddy is going through. I am new to all of this myself, as I was just diagnosed with MGUS last week. There is lots of information here, keep educating yourself. As far as your Dad's feet, maybe that is peripheral neuropathy, which I think is sometimes associated with multiple myeloma. If your not getting adequate answers from his oncologist, maybe his primary doctor can help with ideas for symptom management. Sending thoughts and prayers to your family!
Kristina
So sorry to hear about what you Daddy is going through. I am new to all of this myself, as I was just diagnosed with MGUS last week. There is lots of information here, keep educating yourself. As far as your Dad's feet, maybe that is peripheral neuropathy, which I think is sometimes associated with multiple myeloma. If your not getting adequate answers from his oncologist, maybe his primary doctor can help with ideas for symptom management. Sending thoughts and prayers to your family!
Kristina
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kristina - Name: Kristina
- Who do you know with myeloma?: MGUS
- When were you/they diagnosed?: April 25th 2013 KU Oncology Center
- Age at diagnosis: 38
Re: Myeloma...what to expect?
Hi Lisa and welcome... I am new here too 
I don't think your reasons for being here are selfish I think that I certainly appreciate hearing people's stories about Myeloma as it is a world that is new to me as well. Both my mother in law and husband were diagnosed with Myeloma a couple of months ago - my mother in law lives in another state of Australia (too far for us to go visit now that my husband is on treatment too) so I don't know a lot of details about her condition either... my brother in law is occasionally talking to doctors and he thinks they said she was stage 2. She did respond well to the initial round of treatment but didn't want to continue (probably due more to grieving the loss of her husband a few months ago....) but she said the treatment makes her so tired. They (the police)ended up having to kick her door down to let the ambulance in a couple of weeks ago as she had a fall and couldn't get to the door, turns out she has diabetes as well now. She is in hospital so don't know yet if they are continuing her treatment or what!? I am at peace somewhat with her though as she is ready to go and has a strong faith.
With my husband he is 45... that is harder to accept - I am struggling with anxiety around this. He has always been so active and never gets sick... to now have him sleeping most days and dragging himself to work when he has to. He has rib and back pain as well from the 3 lesions they have found which means he can't do all the work he used to love like splitting wood and working on cars. Watching him grieve the loss of a part of his life is hard. We are thankful that our children are all grown up now though, our youngest turns 20 this month and we have 4 grandsons already
I am still asking the question... what do I expect? I wonder if how I feel is normal... I wonder if we might overlook options that might be better than others ... I wonder if we will financially survive as we don't have anything to fall back on! So much to consider... being part of a forum like this is helpful so I would say keep coming back and get what you need just as the rest of us here are. All the best with your dad - and for you / family blessings!
I don't think your reasons for being here are selfish I think that I certainly appreciate hearing people's stories about Myeloma as it is a world that is new to me as well. Both my mother in law and husband were diagnosed with Myeloma a couple of months ago - my mother in law lives in another state of Australia (too far for us to go visit now that my husband is on treatment too) so I don't know a lot of details about her condition either... my brother in law is occasionally talking to doctors and he thinks they said she was stage 2. She did respond well to the initial round of treatment but didn't want to continue (probably due more to grieving the loss of her husband a few months ago....) but she said the treatment makes her so tired. They (the police)ended up having to kick her door down to let the ambulance in a couple of weeks ago as she had a fall and couldn't get to the door, turns out she has diabetes as well now. She is in hospital so don't know yet if they are continuing her treatment or what!? I am at peace somewhat with her though as she is ready to go and has a strong faith. With my husband he is 45... that is harder to accept - I am struggling with anxiety around this. He has always been so active and never gets sick... to now have him sleeping most days and dragging himself to work when he has to. He has rib and back pain as well from the 3 lesions they have found which means he can't do all the work he used to love like splitting wood and working on cars. Watching him grieve the loss of a part of his life is hard. We are thankful that our children are all grown up now though, our youngest turns 20 this month and we have 4 grandsons already
I am still asking the question... what do I expect? I wonder if how I feel is normal... I wonder if we might overlook options that might be better than others ... I wonder if we will financially survive as we don't have anything to fall back on! So much to consider... being part of a forum like this is helpful so I would say keep coming back and get what you need just as the rest of us here are. All the best with your dad - and for you / family blessings!
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Ulrika - Name: Ulrika
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: 3/2012
- Age at diagnosis: 45
Re: Myeloma...what to expect?
I am not sure I am "replying" to Kristina or Ulrika....I barely know how to fire up this lap top....!
To both of you..Thank You for even taking the time to reach out. I am not able to "talk" at this moment...but I wanted to acknowledge your msgs. So that you will continue to share with me your experiences. I may be able to give you the hope you need....as my daddy wasn't diagnosed until he was in his 70's...he had had this many years without us knowing. Had he been diagnosed early.....
I want to learn how to "chat" so, plz respond and thank you for caring about me and my family. It really shocked me to find that you guys felt compelled to "talk" to me. It really is the little things in life....isn't it? Thank you
To both of you..Thank You for even taking the time to reach out. I am not able to "talk" at this moment...but I wanted to acknowledge your msgs. So that you will continue to share with me your experiences. I may be able to give you the hope you need....as my daddy wasn't diagnosed until he was in his 70's...he had had this many years without us knowing. Had he been diagnosed early.....
I want to learn how to "chat" so, plz respond and thank you for caring about me and my family. It really shocked me to find that you guys felt compelled to "talk" to me. It really is the little things in life....isn't it? Thank you
Re: Myeloma...what to expect?
http://myeloma.org/ArticlePage.action?articleId=190
I have been reading more about myeloma since my diagnosis of MGUS. I have terrible foot pain and neuropathy of unknown source. I saw quite a bit of new literature coming from cancer centers on foot pain and the Igg or Igm of myeloma. Do some research. I do suppose your Dad has tried gabapentin? Sorry there is no clear answer here.
I have been reading more about myeloma since my diagnosis of MGUS. I have terrible foot pain and neuropathy of unknown source. I saw quite a bit of new literature coming from cancer centers on foot pain and the Igg or Igm of myeloma. Do some research. I do suppose your Dad has tried gabapentin? Sorry there is no clear answer here.
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sroadruck
Re: Myeloma...what to expect?
Hi Lisa….Sorry to hear of your dads difficulties. First, let me reasure you that you need not feel bad about not learning more about Multiple Myeloma. The fact you have joined this group shows your love and concern for your dad, and your mother. I would also suggest you investigate the information provided by the International Myeloma Foundation (IMF) and Multiple Myeloma Research Foundation (MMRF). They are both great originations, and are there for the patient and their families. Personally I have attended Patient & Family Seminars the IMF holds once a year since 2004, and they have been such a great help in understanding multiple myeloma, and learning about the different ways multiple myeloma effects each of us. Multiple Myeloma is a unique type of cancer. Treatments also cause each of us different problems.
Doing your own research on multiple myeloma can honestly scare the heck out of you! I know it did me! I was diagnosed with multiple myeloma Nov., 2003, and at that time the survival for multiple myeloma patients was not very promising. Although my lab results indicated I fell in the Stage II category, I had No physical problems. I was 56 at the time, and after much discussion with my oncologist, his obtaining opinions from other multiple myeloma specialists, and much prayer, we decided to not start any treatment until my symptoms worsened, and/or my M-Protein reached a certain level…which in my case was 3 g/dl. Thus, you could say I fell into the smoldering category for multiple myeloma. Fortunately it was not until May, 2008, that I needed to begin my treatments. Lisa, even in 2006, when your dad was first diagnosed, the prognoses, and the treatment options, were not very good. But, by the time I started my chemo there were new novel drugs available, and the use of them in combination, and the use of stem cell transplants as first line therapy was being used.
Unfortunately for me, these new novel drugs and a stem cell transplant, which was done Nov., 2008, did not really do much for me. I have what is called refractory Multiple Myeloma, and due to my genes, I am resistant to chemo and will never be able to reach remission. That said, I have been able to sustain my life with multiple myeloma, and have learned to live with my disease. I have been told I probably only have a couple years to live, and in Aug., 2010 I was told it probably would be less than a year unless we found something to slow my progression. Because of not responding to my initial chemos and stem cell transplant, I decided to take part in clinical trials. Prior to Aug., 2010, I had been part of two clinical trials, which were also ineffective in slowing my progression. So, Sept., 2010, I started my 3rd clinical trial, using thalomid, Revlimid and dexamethasone, plus other drugs to help with the side effects. Although this CT did not get me to remission, it did reduce my level of multiple myeloma to a point that has managed to keep me alive well beyond the “less than a year” time frame. In about 2 weeks I will complete my 33rd cycle, 33rd month, in this clinical trial. After 27 cycles I stopped my steroids, dexamethasone, due to the side effects it had caused, and then after cycle 28, I was given a chemo “holiday” for about 6 weeks, also due to my side effects. Unfortunately your body can adjust to receiving any type of chemotherapy, and it appears we have reached the end of this clinical trial. My myeloma has begun its progression once again, although slowly at this point. So, my doctor and I have some decisions to make in a couple of weeks. The good news is there are several new novel drugs that are now available, and I am looking forward to the future. My intent is to continue in the clinical trial setting in hopes of not only being a benefit to me, but also to benefit others with multiple myeloma in the future.
I am a little concerned about what seems to be the lack of information you and your dad have been given concerning his myeloma. You did not mention whether he is currently receiving any chemotherapy, or if he is what it might be. As I said, there are many options now available, and because each of us respond differently, it is difficult to advise which is best. You mentioned trusting your oncologist, which is something each of us hope is the best for us. Again, do not feel bad about this, because this is what any of us would hope. However, it is still our lives, and becoming aware of multiple myeloma yourself, will help in your understanding, and give you an idea of questions that need to be asked and addressed. You also mentioned the Univ. of Tn. Medical Center. I am sure they are a good facility, but make sure their Myeloma department is fully up to date on all the latest advancements in the treatment for myeloma. I am receiving my treatments at MD Anderson Cancer Center, Houston, Texas. You might consider contacting the Lymphoma/Myeloma Clinic there just to see if they have more to offer your dad. You also mentioned that your dad is on steroids. This could be part of his feet problems. Depending on what chemo you dad may have received, or receiving, there a many different side effects. One that we affectionately call “chemo brain” causes our memory to not be very sharp at times. So, this might be part of the problem with your dad not calling like he once did. Steroids and chemo can also cause you to “nap” more often than what is normal. You are correct, it is actually “sleeping”, but we like to refer it to napping, which seems to make it not as unusual. You state that you believe your dad is in his “final stage”. Lisa, there have been so many advances in the treatment for myeloma that I believe there is Always Hope! The key is knowledge, and like you said, trusting those that are treating your dad.
Sorry for the long story, but felt it might help you. I, like your dad, am at peace with my Lord. But, even saying this, when you are face with what you think is possibly immediate death, you still find it difficult. Pneumonia is one of the possible side effect from my chemo drug combinations. In Feb., 2011, I had been in the hospital with pneumonia for 3 days and nothing seemed to be done to reduce my 104 degree fever. My doctors did not give me much of a chance to survive. Well, I prayed to my God and asked Him to either take me to be with him, or to heal me. I honestly heard Him speak to me, not verbally I guess, but still He told me to go to sleep and all would be well. I fell into the most calm and peaceful sleep, and knew that when I awoke I would either be sitting by His side, or be healed. 2 hours later when they came in for my schedule taking of vital signs….my fever had broken! My point is…with God, All Things are Possible! Of course we need our doctors, but I also know that what they do is guided by Him! Wishing your dad nothing but the best, and the same for you and your mother! God Bless and you all are in my prayers.
Doing your own research on multiple myeloma can honestly scare the heck out of you! I know it did me! I was diagnosed with multiple myeloma Nov., 2003, and at that time the survival for multiple myeloma patients was not very promising. Although my lab results indicated I fell in the Stage II category, I had No physical problems. I was 56 at the time, and after much discussion with my oncologist, his obtaining opinions from other multiple myeloma specialists, and much prayer, we decided to not start any treatment until my symptoms worsened, and/or my M-Protein reached a certain level…which in my case was 3 g/dl. Thus, you could say I fell into the smoldering category for multiple myeloma. Fortunately it was not until May, 2008, that I needed to begin my treatments. Lisa, even in 2006, when your dad was first diagnosed, the prognoses, and the treatment options, were not very good. But, by the time I started my chemo there were new novel drugs available, and the use of them in combination, and the use of stem cell transplants as first line therapy was being used.
Unfortunately for me, these new novel drugs and a stem cell transplant, which was done Nov., 2008, did not really do much for me. I have what is called refractory Multiple Myeloma, and due to my genes, I am resistant to chemo and will never be able to reach remission. That said, I have been able to sustain my life with multiple myeloma, and have learned to live with my disease. I have been told I probably only have a couple years to live, and in Aug., 2010 I was told it probably would be less than a year unless we found something to slow my progression. Because of not responding to my initial chemos and stem cell transplant, I decided to take part in clinical trials. Prior to Aug., 2010, I had been part of two clinical trials, which were also ineffective in slowing my progression. So, Sept., 2010, I started my 3rd clinical trial, using thalomid, Revlimid and dexamethasone, plus other drugs to help with the side effects. Although this CT did not get me to remission, it did reduce my level of multiple myeloma to a point that has managed to keep me alive well beyond the “less than a year” time frame. In about 2 weeks I will complete my 33rd cycle, 33rd month, in this clinical trial. After 27 cycles I stopped my steroids, dexamethasone, due to the side effects it had caused, and then after cycle 28, I was given a chemo “holiday” for about 6 weeks, also due to my side effects. Unfortunately your body can adjust to receiving any type of chemotherapy, and it appears we have reached the end of this clinical trial. My myeloma has begun its progression once again, although slowly at this point. So, my doctor and I have some decisions to make in a couple of weeks. The good news is there are several new novel drugs that are now available, and I am looking forward to the future. My intent is to continue in the clinical trial setting in hopes of not only being a benefit to me, but also to benefit others with multiple myeloma in the future.
I am a little concerned about what seems to be the lack of information you and your dad have been given concerning his myeloma. You did not mention whether he is currently receiving any chemotherapy, or if he is what it might be. As I said, there are many options now available, and because each of us respond differently, it is difficult to advise which is best. You mentioned trusting your oncologist, which is something each of us hope is the best for us. Again, do not feel bad about this, because this is what any of us would hope. However, it is still our lives, and becoming aware of multiple myeloma yourself, will help in your understanding, and give you an idea of questions that need to be asked and addressed. You also mentioned the Univ. of Tn. Medical Center. I am sure they are a good facility, but make sure their Myeloma department is fully up to date on all the latest advancements in the treatment for myeloma. I am receiving my treatments at MD Anderson Cancer Center, Houston, Texas. You might consider contacting the Lymphoma/Myeloma Clinic there just to see if they have more to offer your dad. You also mentioned that your dad is on steroids. This could be part of his feet problems. Depending on what chemo you dad may have received, or receiving, there a many different side effects. One that we affectionately call “chemo brain” causes our memory to not be very sharp at times. So, this might be part of the problem with your dad not calling like he once did. Steroids and chemo can also cause you to “nap” more often than what is normal. You are correct, it is actually “sleeping”, but we like to refer it to napping, which seems to make it not as unusual. You state that you believe your dad is in his “final stage”. Lisa, there have been so many advances in the treatment for myeloma that I believe there is Always Hope! The key is knowledge, and like you said, trusting those that are treating your dad.
Sorry for the long story, but felt it might help you. I, like your dad, am at peace with my Lord. But, even saying this, when you are face with what you think is possibly immediate death, you still find it difficult. Pneumonia is one of the possible side effect from my chemo drug combinations. In Feb., 2011, I had been in the hospital with pneumonia for 3 days and nothing seemed to be done to reduce my 104 degree fever. My doctors did not give me much of a chance to survive. Well, I prayed to my God and asked Him to either take me to be with him, or to heal me. I honestly heard Him speak to me, not verbally I guess, but still He told me to go to sleep and all would be well. I fell into the most calm and peaceful sleep, and knew that when I awoke I would either be sitting by His side, or be healed. 2 hours later when they came in for my schedule taking of vital signs….my fever had broken! My point is…with God, All Things are Possible! Of course we need our doctors, but I also know that what they do is guided by Him! Wishing your dad nothing but the best, and the same for you and your mother! God Bless and you all are in my prayers.
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bbrown687782 - Name: Bill
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Nov. 2003
- Age at diagnosis: 56
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