Hello, I am so happy to have found this site, my husband was diagnosed with multiple myeloma on September 17th and we had our first appointment with our oncologist September 24th with a BMB on October 1st. Our Dr. is also a hematologist . My husband was diagnosed from a routine blood work before he was having some minor throat surgery but it was delayed because of his kidneys. My husband has had kidney problems all his life, he is 69, when he was eight years old he had an illness that damaged his kidneys but not to the extent of every giving hinm major probems, he has also been in mild renal failure. Last summer when he was getting ready for another minor throat surgery it again happened for the first time, what happened is he was taking Ibuprofen for his knee and it worked against his kidneys, he got off the Iburprofen and kidnes again starting functionally correctly. In February of this year he had total knee replacement with no problems, on his return home he could not take the Loratab (he did not like the effects) so he started taking Ibuprofen which resulted in the problem this last month. He got off the Iburprofen and the first week his kidneys improved , second week no improvement but not getting worse so Dr. ordered a 24 urine test and this is where they found the myeloma. My husband has none of the symptons, his calcium is good, Renal is getting better (which I am praying was a result of Ibuprofen) he is not anemic . he does have some small lyptic on the bones between his wrist and elbow and he has no symptons. No bone pain, no fatigue, no loss of appetite .........I know I am rattling but this last month as been the most frightening month of my life, we should be getting the results of the biopsy this week and we will go from there. My husbands oncologist said that he could have had this in his system for decades...so much to try and understand.......
I wish your husband and yourself well as you embark on this journey. My dad was diagnosed 4 weeks ago. He also found out he had this after having back surgery. HUGE shock for all of us!! We are keeping a positive attitude and hoping for the best. So far, he is having a lot more bad days than good, but hoping once the meds kick in, he will see brighter days!!
My husband and I are waiting for the results of his BMB, my husband is having no pain and feeling great, of course we need to wait and hear the biopsy report before we decide what course of action we are going to take....if we are not happy with our oncologist/hematologist (so far fantastic ) we are heading to MD Anderson in Houston, my husband has the most positive attitude, goes to the gym, fishes and still does yard work......He is actually doing better then I am!
A few things that a newly diagnosed patient should consider:
1.The Multiple Myeloma Research Foundation has an observational study for newly diagnosed people. See their website and consider participating. This gathers data that can benefit you and others.
2. Look into clinical trials -- there are a few for newly diagnosed. (MD Anderson may have some for example. Look also on MMRF website).
3. Make sure that your doctor is good. And if your oncologist is not a multiple myeloma specialist (i.e. myeloma is all they do), work also with a clinician who is, and who is located at a major myeloma center (e.g. MD Anderson as you mentioned in your reply to another message).
4. At 69 and with kidney problems you may or may not be eligible for an autologous stem cell transplant. In connection with point 3, make sure you consult with a myeloma specialist at a center that does a lot of transplants, so that they can give you advice about this and develop a plan. Transplant is the standard of care nowadays, so you generally want to do one if you can.
Good luck!
Hello! I can see each case is different, my husband after a BMB was diagnosed with smoldering myeloma on 11/09/2012. We went for a 3rd opinion and now we are with one of the best places for cancer care, Sylvester University of Miami Cancer Institute, he's 74 now so,for almost 2 years he hasn't been treated for this condition yet, which is hard for me to understand, but I know Doctors know better, all kind of tests are been done periodically, there's a little bit of a problem with the prostrate. I don't know when the treatment will start, so far he's feeling well, eats good, swims and walks a lot, for which I thank God. His Drs. explained to us all about this illness and what we can expect, but it's not easy. Hope for the best.
Hi Toni, I am very close to the same boat you and your husband are in. :) I was diagnosed 3 weeks ago... had a BMB last Tuesday and getting the results this next Tuesday. I am completely overwhelmed and don't know what to think. I am 61 yrs ....62 next month...female. I didn't think I had any symptoms... but the more I read... the more I see that perhaps much of my little nagging complaints could have been related. But of course... I wrote it off to ... hormones.... getting older... aches and pains... etc.. I certainly don't feel bad enough to think I should be starting any treatment for cancer. i think I am still in denial. I have taken too much Advil for a long time now... so back off when I can. I guess the MM is why I have been hurting.
I will be anxious to follow your husband's journey as well as share my experiences.... since we are both beginning. Hopefully, we will BOTH get good news... whatever that is... I don't even know what to hope for! Sandi
Sandi, you might want to read my reply above -- should mostly apply to you as well. One thing to do is find a major MM center near you and get a consult there. As to what to hope for, I suggest this is getting a clear treatment plan from a top specialist. This is something you can actually arrange to have happen.
Mommav said:
I wish your husband and yourself well as you embark on this journey. My dad was diagnosed 4 weeks ago. He also found out he had this after having back surgery. HUGE shock for all of us!! We are keeping a positive attitude and hoping for the best. So far, he is having a lot more bad days than good, but hoping once the meds kick in, he will see brighter days!!
rosie said:
Mommav said:I wish your husband and yourself well as you embark on this journey. My dad was diagnosed 4 weeks ago. He also found out he had this after having back surgery. HUGE shock for all of us!! We are keeping a positive attitude and hoping for the best. So far, he is having a lot more bad days than good, but hoping once the meds kick in, he will see brighter days!!
Mommav: I am Rosario, I was talking about my husband who is 74, he was diagnosed 11/09/2012 and still doesn't receive any treatment for the MM, is your father getting any treatment? thank you.
Victor Thuronyi said:
Sandi, you might want to read my reply above -- should mostly apply to you as well. One thing to do is find a major MM center near you and get a consult there. As to what to hope for, I suggest this is getting a clear treatment plan from a top specialist. This is something you can actually arrange to have happen.
Victor,
Thank you. I have been reading as many posts as I can. Is there an website somewhere that will tell me the TOP MM specialists?
Sandi
Victor Thuronyi said:Sandi, you might want to read my reply above -- should mostly apply to you as well. One thing to do is find a major MM center near you and get a consult there. As to what to hope for, I suggest this is getting a clear treatment plan from a top specialist. This is something you can actually arrange to have happen.
I don't think there is a comprehensive listing but you can piece it together. The Multiple Myeloma Research Foundation has a list of specialised treatment centers on its website that seems to list most of the best centers. That same website describes the MMRF's Compass Study. You can also find on the MMRF site a number where you can call and speak with a nurse. They can direct you to treatment centers and clinical trials. I'd recommend your doing that -- no cost!!
Other authoritative websites to look at are the International Myeloma Foundation and the Myeloma Beacon.
Sandi0033 said:
Victor,
Thank you. I have been reading as many posts as I can. Is there an website somewhere that will tell me the TOP MM specialists?
Sandi
Victor Thuronyi said:Sandi, you might want to read my reply above -- should mostly apply to you as well. One thing to do is find a major MM center near you and get a consult there. As to what to hope for, I suggest this is getting a clear treatment plan from a top specialist. This is something you can actually arrange to have happen.
Hi Sandi, I am sorry that it has taken me so long to respond but my husband and I were out of town for a few days, I agree with you with this unbelievable situation, you being the patient has to be very hard but as I told my husband and I really do mean this I wish it was I who was going through this. My husband had his BMB on October 1st, our oncologist/hematologist is going out of town this next week October 13th through the seventeenth so our next apt is not until October 22nd, the Dr. did say that they should have preliminary reports this last week and if anything was strange about it he would call and so far no call so I am praying this is good news. I have been doing so much research on this cancer trying to understand the terms, what is so strange to me is that my husband had no symptoms except for the mild renal failure which he has had for years due to a illness he had when he was younger and is aggravated when he takes Ibuprofen for a bum knee which he had replaced this last February , I would think if it was present then they would have caught this before a major surgery, his oncologist says it could have been in his system for decades...unbelievable. We have decided to get a second opinion if not satisfied with our oncologist, although he is an extremely intelligent young man, if we do get a second opinion we are going to MD Anderson in Houston Texas.....I will keep you in my prayers...
Victor Thuronyi said:
I don't think there is a comprehensive listing but you can piece it together. The Multiple Myeloma Research Foundation has a list of specialised treatment centers on its website that seems to list most of the best centers. That same website describes the MMRF's Compass Study. You can also find on the MMRF site a number where you can call and speak with a nurse. They can direct you to treatment centers and clinical trials. I'd recommend your doing that -- no cost!!Other authoritative websites to look at are the International Myeloma Foundation and the Myeloma Beacon.
Sandi0033 said:Victor,
Thank you. I have been reading as many posts as I can. Is there an website somewhere that will tell me the TOP MM specialists?
Sandi
Victor Thuronyi said:Sandi, you might want to read my reply above -- should mostly apply to you as well. One thing to do is find a major MM center near you and get a consult there. As to what to hope for, I suggest this is getting a clear treatment plan from a top specialist. This is something you can actually arrange to have happen.
How did your husband do for the two years without treatment?
rosie said:
Hello! I can see each case is different, my husband after a BMB was diagnosed with smoldering myeloma on 11/09/2012. We went for a 3rd opinion and now we are with one of the best places for cancer care, Sylvester University of Miami Cancer Institute, he's 74 now so,for almost 2 years he hasn't been treated for this condition yet, which is hard for me to understand, but I know Doctors know better, all kind of tests are been done periodically, there's a little bit of a problem with the prostrate. I don't know when the treatment will start, so far he's feeling well, eats good, swims and walks a lot, for which I thank God. His Drs. explained to us all about this illness and what we can expect, but it's not easy. Hope for the best.
Hello Guys, what a great series of comments, Just for all your information I am 3 1/2 years down the road from myeloma diagnosis. I have been on velcade/revlimid and dexamethasone for most of the time. Had the transplant and yes it can fail as mine has, the myeloma is back and I have become double refractory to velcade and revlimid. This can be a long road with many bumps and turns, just do not become discouraged, none of us know what day will be our last. We have been lucky enough to be given wakeup call to live our lives to the fullest, so enjoy life, let the doctors do their jobs and do not let myeloma rule . Ps Educate yourselves on myeloma, get to know it and your body. Watch out for side effects of your treatments, they are many and they will happen. Be aware of how you feel, if your a care giver or significant other watch the patient and look for any changes. Often times they are subtle and slow to take place so the patient does not notice them, you can.
I wish I was in remission, but I am not so I continue on in a new reality, the world has changed, but I am still happy and I feel good. So the war continues myeloma wins a battle then I win a battle, the key is to not let it win the war going on in your emotions or mind. You will have good days and bad days, You just let the good days carry you through the bad days then they all seem good.
God Bless and Good Luck
Hi Rosie - If your husband was diagnosed as "smoldering" then the standard of care worldwide is to NOT treat it yet, and that's the standard all over the world. Studies have shown there's no difference in outcome if you wait until the myeloma is active and the patient has a better quality of life when not receiving all those chemicals and taking all the related meds that are required. I assume your husband is being monitored regularly, so that if and when his myeloma becomes active, appropriate treatment will start? I was diagnosed 20 months ago, no symptoms and in great health and my doctor - when it was suggested to her that the results of routine blood work could point to multiple myeloma and this should be further explored - told me I was in such good shape she couldn't imagine I had it but even if so she expected mine was "smoldering" and explained that at that stage treatment doesn't begin and that in many cases it takes years before developing into full-blown myeloma and indeed in some cases never progresses. As it turned out, I was Stage 2 but responded well to treatment and after taking part in a clinical trial involving Kyprolis and autologous stem cell transplant, I've been in full remission since May and back to full normal routine. BTW, I'm an American living and working in The Netherlands, with Dutch medical insurance. So I've been taking this journey in a foreign country but luckily one where most people speak English and which has a top researcher in MM who is the head of the hematology department where I'm being treated.
rosie said:
Hello! I can see each case is different, my husband after a BMB was diagnosed with smoldering myeloma on 11/09/2012. We went for a 3rd opinion and now we are with one of the best places for cancer care, Sylvester University of Miami Cancer Institute, he's 74 now so,for almost 2 years he hasn't been treated for this condition yet, which is hard for me to understand, but I know Doctors know better, all kind of tests are been done periodically, there's a little bit of a problem with the prostrate. I don't know when the treatment will start, so far he's feeling well, eats good, swims and walks a lot, for which I thank God. His Drs. explained to us all about this illness and what we can expect, but it's not easy. Hope for the best.
God bless you Rodney. Your positive attitude and words of encouragement for the rest of us are an inspiration. I am praying for you, and for your doctors that they may find a drug combination that pushes you back into remission. When was your transplant? And what level of response did you achieve before relapse? How long from transplant to relapse? Were you on maintenance therapy during that time? There are so many new agents to fight this damn disease, surely there must be some other lines of therapy your doctors can try? I was in a clinical trial last year for carfilzomib (kyprolis) for newly-diagnosed patients, did well and after chemo, stem cell transplant and then a very strong consolidation chemo protocol (4 more months, full-strength just like induction chemo) I achieved complete remission. No maintenance therapy in this trial which makes me nervous but it's great to be drug-free and so far - 21 months after diagnosis, 13 months after transplant and 8 months after completion of chemo - I'm still in remission.
rodney said:
Hello Guys, what a great series of comments, Just for all your information I am 3 1/2 years down the road from myeloma diagnosis. I have been on velcade/revlimid and dexamethasone for most of the time. Had the transplant and yes it can fail as mine has, the myeloma is back and I have become double refractory to velcade and revlimid. This can be a long road with many bumps and turns, just do not become discouraged, none of us know what day will be our last. We have been lucky enough to be given wakeup call to live our lives to the fullest, so enjoy life, let the doctors do their jobs and do not let myeloma rule . Ps Educate yourselves on myeloma, get to know it and your body. Watch out for side effects of your treatments, they are many and they will happen. Be aware of how you feel, if your a care giver or significant other watch the patient and look for any changes. Often times they are subtle and slow to take place so the patient does not notice them, you can.
I wish I was in remission, but I am not so I continue on in a new reality, the world has changed, but I am still happy and I feel good. So the war continues myeloma wins a battle then I win a battle, the key is to not let it win the war going on in your emotions or mind. You will have good days and bad days, You just let the good days carry you through the bad days then they all seem good.
God Bless and Good Luck
Hi Sandi, Did you get any results or further information yet? I understand what you're experiencing, I'm about 19 months further down the road with MM than you. Yes, it's a scary, overwhelming time but all I can say is read, read, read and educate yourself. Victor gives excellent advice. I've found the MM Research Foundation website to be a treasure trove of info, a great resource and you can even phone them and specialists will speak with you, address your specific questions. MMRF was started by a high-powered female exec in the insurance industry and she's really moved research in this field forward while at the same time creating a site that's useful and helpful to the patient - a perspective she very well understands. (nearly 20 years down the road, she's still going strong). Myeloma Beacon is also helpful. Don't be scared by some of what you'll find on the internet, many sites and much information is out of date, there have been huge advances in this field and now the prognosis is much better than even a few years ago. I found information was empowering, it helps my husband and me to cope. I had no symptoms (I thought) when diagnosed but it turned out there is a big lesion in my left humerus and several smaller ones in skull and spine, I was Stage 2 but luckily my myeloma was super-responsive to the treatment I had and after a long 11 months of pretty intensive treatment including chemo, autologous stem cell transplant and then 4 more months of chemo, I'm in full remission and feeling great, life is back to normal. Even during treatment, most of the time I felt good enough to work. Last month I was on safari in Botswana; in September spent 8 days hiking high in the Swiss Alps. Back in May - just 2 months after completing all my treatments - my husband & I walked the last 112 km (about 70 miles) of the pilgrim's route the Camino de Santiago across northern Spain, and did it in 5 days. So take heart! I know that everyone's experience is different, but don't limit your possibilities just because you have cancer. I'm 58, and am looking forward with hope and anticipation. (Right now, I'm planning a ski vacation for January) I found that for me, maintaining a positive attitude really helped not just myself but also those around me - especially my husband, this has been harder on him than on me. I'd bounce into chemo with a big smile and "hello" for everyone and would welcome the needle and kyprolis that flowed through it, closed my eyes and envisioned it speeding through my bloodstream, on a search-and-destroy mission against those myeloma cells. My attitude was "let's kick some cancer cell butt today!" Of course there are ups and downs, good days and bad, but a positive attitude helps tip the balance in your favor. Reach out to friends and family - and strangers who've been through this and therefore really understand - and you'll find some who resonate and "get it" and letting them share your burden with you will help. I had a great friend who actually works in a non-medical capacity at Mayo who really helped me, I called her my sherpa. Find one for yourself, someone positive who you can vent and rage to, share your fears and triumphs with. Good luck to you, and God bless,
Tammy
Sandi0033 said:
Hi Toni, I am very close to the same boat you and your husband are in. :) I was diagnosed 3 weeks ago... had a BMB last Tuesday and getting the results this next Tuesday. I am completely overwhelmed and don't know what to think. I am 61 yrs ....62 next month...female. I didn't think I had any symptoms... but the more I read... the more I see that perhaps much of my little nagging complaints could have been related. But of course... I wrote it off to ... hormones.... getting older... aches and pains... etc.. I certainly don't feel bad enough to think I should be starting any treatment for cancer. i think I am still in denial. I have taken too much Advil for a long time now... so back off when I can. I guess the MM is why I have been hurting.
I will be anxious to follow your husband's journey as well as share my experiences.... since we are both beginning. Hopefully, we will BOTH get good news... whatever that is... I don't even know what to hope for! Sandi
Hi Toni, I was just wondering how your husband is doing, has he started treatment, and if so, where? I hear what you're saying about how hard it is for the spouse of someone diagnosed with MM, I was diagnosed in March of last year and it's been harder on my husband than on me - I wouldn't trade places with him! I wish you both all the best, and try to stay positive and optimistic, I truly believe mental attitude has a big effect on the body, it's certainly helped me through the last 20 months and I have emerged from intense treatment in complete remission and feeling perfectly normal, back to full activities, work and play. I don't know how long it will last, but if and when I relapse, I intend to face this bastard with just as much faith and vigor as before.
One thing this whole experience has taught me and my husband is - live in the moment, enjoy each day. Life is a gift, and for each of us it will end one day - there's no escaping that. A cancer diagnosis forces one to confront that simple fact of life, you can choose to either dwell on the unfairness of our fleeting time on earth, or use it as a reminder to seize the day and enjoy the beauty of this world while you can. Drink the good wine now, eat dessert first, tell those you love how much they mean to you - every single day. So many people don't have the opportunity to reach this realization - gone in a moment in a car crash or sudden heart attack - so take advantage and (strange as it sounds) find some good in your situation. Focus on the positive, share a good cry when you need to but then always find a reason to smile. And know that there are many people out there who care.