Hi all. Does the mm get worse before getting better. Mom has had this since May of this year. My mom is on 11 medications and just seems to be getting worse. Before she could walk a little but now really nothing. The doctor said once she starts the chemo by mouth she will feel much better. I just do not know. The problem is in the back. She has no other cancer in her body which is good. She is in the early stages of this. Maybe this is harder on her body because of her being 70. Any help would be great. Thanks!
Dear Rose,
Sorry to hear your mom is not doing well. I think multiple myeloma symptoms are unique for every individual.just wanted to share my moms fight with myeloma. She was diagnosed with mm on 2 nd January this year . She also had an accompanying sphenoid sinus plasmacytoma which did not have any Symptoms till December 15 , 2012 when she presented with a head ache. An MRI done with contrast resulted in acute renal failure and since then her life has been a roller coaster ride. She was just 65. Her bone marrow biopsy showed 66 percent infiltration by plasma cells . She was started on velcade weekly along with dexamethasone. Hemodialysis went on till feb2013 , her kidneys started functioning then. Even after 2 cycles of velcade, her plasmacytoma showed no signs of improvement and her headache worsened with swelling of face. She was started on palliative radiation from 1st April , developed a stroke on 8 th April. Since her infarct affected her occipital cortex, she completely lost her vision and had right sided hemiparesis. Most difficult part was she got totally disoriented after that. She became weaker and weaker since April , gave 3 units of packed cells as her hb was falling, but continued velcade. She went into a state of speaking very less ( though not oriented she used to speak till then)around last week of June, stopped eating on 29 th June.Went into a state of unconsciousness on 30 th June and passed away peacefully on 2 nd July. All her blood parameters including calcium were absolutely normal when checked on 29 th of June. Her platelet counts were falling though , was attributed to velcade.
Think each person’s response to chemo is different. My mother was diagnosed late and had multiple complications. Probably that is why she did not respond to velcade at all. I am sure ur mother would feel much better after her chemo. Prayers …Shobha
Keeping in mind that I am no expert, that every patient is different, that doctors and hospitals seem to know very little or nothing about MM, and that it's called MULTIPLE Myeloma for reason, I can only share with you my personal experience. My mom lived only 36 months after diagnosis. We had never even heard of MM before she got it. She was 84, not a candidate for stem cell transplant, and had been in incredibly great health before this horrible cancer struck her down. During the last 6 months of her life, she began to suffer collapses which started with flu - like symptoms, which caused her to stay in bed, which weakened her, and she lost her appetite and became dehydrated, and then when she would suddenly try to get some help she would began gasping with shortness of breath and had to be rushed to the hospital. Here's the deal. You need to monitor her bloodwork, weekly if possible. The doctors and nurses won't do it --they never notified us that her blood units had dropped from 12 (safe) to 8 (very dangerous) at all. I only discovered this by looking through the paperwork after her death. At the hospital they tried to say that she was having a heart attack--well duh! she didn't have any red blood cells and the heart and other organs were starved for oxygen (she had never had plaque, high cholersterol, any signs of heart disease before). By the time I got there they had deposited her into a hospice to die, where she could not be given any more units of blood. It was just a fiasco. So, my recommendations are:
1. Assign caregivers 24 -7 even though your mom protests. My mom was very clear of mind, fiercely independent, and didn't want to "trouble" us, and hid her weight loss and lack of mobility from us until it was too late. The caregivers should (a) help your mom make decisions about chemo (b) try to make your mom eat regularly and healthfully (e.g. bean soups, vegies, even calf liver for anemia, etc. Be patient--she may take 1 bite and push it away (c) push the hydration, water, have lots of cups of tea with her, etc.
2. Check her bloodwork and weight loss regularly. Raise holy hell with the docs if they ignore dropping blood counts.
3. The docs in FL PUSH hydrocodone (Vicodin) ALL the time. After her death I found 4 secret stashes of pain meds, which means all of her different docs were prescribing it all the time. I think she was saving up for suicide, but she wasn't that kind of person and hated taking drugs. But we have no idea what she was on, how much, from whom, and why. So take control of her drug intake, even though the docs say you don't have the authority. You can get your name on as the pick up person and then you and your local pharmacist can monitor that. She will have "bone pain" sometimes and the drugs might be necessary, but don't let her stay in bed for days wonked out on Vicodin because she will stop eating and drinking and moving.
4. Recognize the signs of seriously failing health. My mom gradually stopped walking and rolled around in a chair with wheels (she refused to get in a wheelchair!). She began to sit in the dark with a blank expression on her face or would go to the frig, open it and stare in it and then close it. Always a great conversationalist she began to talk in short sentences and just didn't do much of anything all day except sleep. But she told me to go on, finish up my work and then she would be excited about me moving down to stay with her forever. I stupidly left her to fly up to my job and retire from it and close up my office, only to find out that she was suddenly hosptitalized, short of breath, and in crisis. By the time I got back down to FL, (and I rushed) it was too late (they said).
My internet research suggested that my mom had 3-5 years to live--well she died in exactly 3 years to the day. Not exactly what I had in mind. On the up side, when I was finally told to "accept the endstage of her life" at the hospice I thought that her death was dignified, peaceful, pain free, surrounded by family, and hospice caretakers and that she never had to face the debilitating efects of reoccuring bone tumors, long term chemo, and eventual paralysis. Still it was so very hard to lose such a beloved mother and lady, and two years later I'm still angry at Citrus County Hospital and doctors but she did live beautifully and wonderfully for 8 decades.
Per your message--11 medications seems like an awful lot. Has your doc even done anything to find out if the meds combat with each other. I don't think they even know and I would hate to say that they might not even care. They are quick to prescribe but slow on doing any research on the various interactions of various side effects of meds. Sorry to sound so negative and angry but I am! We must have some decent research on MM! Help to fundraise, it feels a little better.
P.S. Google Pat Killingsworth, MM patient and medical blogger
Hi, I 1st got MM in 2006. Never had any problems with my back and still I do not .I now that Zometa for my bones and no troblems with.One thing is that I never smoked, stopped drinking in 2006 and do not take any drugs, except for what the doctor gives me, I am now 62. Everyone is different and the treatments are to. I did get a Dr. that was a specialist in MM, I did had Dr. that dealt in cancer but he was not good, Got rid of him. I hope this advice helped a little and you mom is hopeful,
Dear Rose:: Sorry to learn about your Mom's illness. I am a 72 year old who was diagnosed in November of 2012. I am taking Velcade & Dexamethazone and appear to be makimg progress. Plasma cells were 80% of bone marrow cells at diagnosis and have been reduced to 40% as of last biopsy in late June. Like many 70+ yr olds, I have "co-morbidities" of heart disease and compromised kidney function. ( Don't you just love that word, "co-morbidities"?..... it just indicates that I should know of at least 3 things that are trying to hasten my demise :-) )
Not knowing what to expect is one of the tough things about this disease....... as every patient seems to be unique. I keep asking what to expect as the disease progresses, but no one can or will answer that question.
I think that Barb's advice about Care-Giver help is essential. I believe strongly that every ppatient, regardless of illness, should have someine (hopefully a family member) who can help listen and interpret what the medial folks are saying.....and <YES, to monitor Rx intakes and reactions. Most of my crises in the last 9 months have been drug interactions and/or alergic reactions to drugs. Dex, for example, exarbates my heart disease symptoms in a most uncomfortable way. Having my wife alert and watching for my reactions to medications has been life-saving on several occasions for me in the last 10 years, so I would recommend asking someone to be observant and tell you or your Mom what they see happening. I have also learned that it is very important to make sure that your several doctors actually talk to each other and coordinateyour care. It is not unusual to have the treatmentts of one contradict the treatments of the other, and only they can resolve the conflicts. I have been quite fortunate in that each of my three docs take the time to coordinate my care. That should be the norm.... but sadly is not.
I hope this is helpful.
Michie
Sorry to hear about your mother. The only thing I can offer is my own story. I have MM. I was diagnosed approximately seven years ago. At that time, I was told I had one to three years to live. I started with oral chemo, and that didn't work so I moved to day chemo, that didn't work. The whole time my protein levels had been elevating. Then I went and had the big monster chemo along with a stem-cell transplant, and that didn't work. I left the hospital with more cancer then I had when I first checked in. After about fourteen days later they shot me full of new plasma so at least I could go home and be more comfortable. When my wife brought me home. there were two nurses with all kinds of stuff to make me comfortable and there was a Hospice person there as well. I saw all this and thought this was it. I was fifty five at the time. I'm now sixty six. I'm on a shitload of medication, including Thalidomide. That's probably the worst one, so now I'm addicted to all kinds of stuff and was told by a Re-hap place to get me clean if that was what I wanted I should be prepared for a year and a half stay, and it was going to be very very hard. So I take the crap and try to have a life. It's hard as you might already know MM comes back that's almost a guarantee. Some life eh! I had the best care in the world at Princess Margaret in Toronto, and so far I'm still here. Everyone is different, and all the treatments are different. So all I can say is to hold on because it's going to be a hell of a ride. If you want to contact me, I hang out at www.project611.wordpress.com
Hello Rose.
Multiple Myeloma is different in all patients. I am 75, diagnosed July 2012 and was deathly sick after a few doses of Revlamid and Allopurinol. My lungs and kidneys gave out. 2 weeks in Intensive care followed by 4 weeks inpatient in rehab to get my strength back. I am on my 2nd tour of chemo. Valcade (injected) and Dex (drip) Had to be hospitalized for a week in January for breathing problems. Kidneys and lungs are ok now. I see the nephrologist every 3-4 months, also a cardiologist. Both are satisfied now.
Bloodwork every week once, before my chemo therapy. Was in remission only from Jan to April and readings were not bad but were spiking a little each week so both my oncologist and I decided to forge ahead and not wait for the bad news.
I was sick until April but now, even with chemo, I am feeling a lot better and even went back to work. I have been a Realtor for 37 years and it is my passion.
Just writing you this so others can hear that if my MM should remain the same, I can live and function with MM and perhaps many others will also. Not everyone is so very sick as in some of these reports. I was never told that I will die within 3-5 years from MM. Many other problems could creep up and I was also diagnosed very late in the disease. My IGG's were over 6000++ but I am hopeful, not for a cure because there is none as of yet, but for a somewhat normal life and I hope all of us with MM are too. Do not be frightened with a new diagnosis of MM. It is treatable in most cases but never curable (up to now)
It may help if we all write to our Congress and Senator people to make some funding liquid for our research of if we could also raise some funds to hand over to the researchers.
Best heartfelt wishes to all
Liz Schmidt in Pa.
I do not have a lot to submit to these postings but I must say the information is very informative. I was diagnosed with initial stages about 5 years ago. It has now advanced to the stages where I am in preparation for the stem cell procedure which I expect to be somewhere around Dec/Jan. I next week I will begin my second month of chemo pills. I am 64 and still able to do all the things I normally could do with only getting a little more tired a little more sooner. The information all of you provides is very helpful. Thank you all....
I have had mm since 10/21/11 was very sick, in and out of the hospital, low dose Chemo pills, doctors kept pushing me to do a stem cell transplant, well a long story short, I went aganst what the doctors said and took a all natural route and now they can’t find any cancer in my blood work from the spep test and they have done this test 3 times in 5 weeks, the doctors are scratching their heads!! He has no clue of what I’m doing. So thank God I’m good for now. There is hope! Just think outside the box and stick to it and have faith! I would be glad to help anyway I can, but you have to set your mind to it and stay with it. You can email me at ■■■■■■■■■■■■■■■■■■■■■■ God bless and never loose hope!
It is different for everyone, I found that the Valcade caused a lot of pain with peripheral neuropathy in the feet and hands. The back pain eased up after awhile as the chemo took effect. Your mom's back might be weak because of age and the cancer could make it worse. I have had a couple back surgeries prior to my cancer and the vertebrae above and below the fusions have compressed and thats painful. Your mom's vertebrae might be compressing too because of the age. I can only suggest more pain meds until she gets through the infusion chemo. I hope she feels better soon, it should get better. God Bless.
MM can be hard to treat, but they are having great success. There are so many new drugs being released and so many in trials that they expect it to become more like a chronic illness in the future. What you need to know is how to get mom to the future. Education and trusting her doc. I get velcade weekly, take dx weekly concurrant with the velcade and take revlimid on a 21 day on and 7 day off schedule. This is the aggressive maint. therapy after a stem cell transplant The transplant doctor set up the protacall , it goes for 11months after. I also get zoemeta for 2 years. They should do blood work weekly before treatment, if her counts go below 10 then they can give Procrit to boost the numbers and stimulate the bone marrow. I have been doing this since June 2011, but I have responded well and do tolerate the treatments well. Keep an eye on things as it becomes mundane and only through questions and answers do we keep things on track. Watch the abnormal protein and the IGG carefully, they should be checking these monthly, the numbers move slowly so most insurance companies will not pay for more frequent testing at the same facility. She should do better when she gets on the oral meds. however velcade is given subq injection, it reduces the side effects. Any bone damage will take time, quite often from what I have seen and read here and elsewhere any major issues will take surgery to repair, I hope this is not the case for your mom, but you may wish to be prepared. The most important thing at this point is to get the MM under control, you must stop the termite infestation before rebuilding the house. Don't expect fast results, it took 15 months before mine was low enough for a transplant, and mine was caught before I had any major issue's An annual checkup with an old friend who saved my life 15 years ago found it. MM can come from radiation therapy for Hodgekins. Most important thing here is to have faith and trust that all is as it should be and if it is a hard day wait for a better one. They will come, write things down, and keep a journal either here on in a book, it helps to look back and see how far you guys have come, it has helped me through some real tough times. Do not believe what you read on the internet as far as time frame for life expectancey as the numbers are not correct, quite often they still don't know because the trials are not complete. Tell mom to watch her weight and drink ensure or boost. I will send you a link for another site, it has life stories and tracks the clinical trials. Some times the trials help, while other times they are discouraging, but remember that they are just trials and are being used to learn. Thank God the search for a cure continues.
May God Bless and care for you guys as you both need his strength.
rodney
http://www.myelomabeacon.com/news/2013/05/24/future-multiple-myeloma-treatment/
Take a look it helps to know where things are headed. Remember though this is only an opinion and it can be wrong.
Rodney, yours is the best advice that I've read anywhere, and I've read a lot of advice! Where were you two years ago when I really needed to learn CORRECT, current, important, information about being a MM caretaker? Why can't doctors provide this information to MM patients and more importantly to their caretakers? Why didn't my mom's doctor even suggest to her, a MM patient, the need for a responsible caretaker to monitor all of this information? They do for Alzheimer's, why not for MM? In my humble and uneducated opinion, it seems that the dangerous symptoms for MM are hard to discern because the patient just feels sort of sick, like the flu, and just doesn't have the mental sharpness and energy to recognize that something is starting to go wrong. That's where that caretaker steps in, recognizes that there is a crisis, and does something about it--e.g. demands to see the doc and/or ER right away.
Thanks, Rodey--I've lost my mom, a famous, and very productive artist, and beautiful woman, forever to MM, and as you know am still angry at her silly doctors, but I would love to see all of your info in a pamphlet/brochure form that is easy to understand for new MM patients and especially for their caretakers.
rodney said:
MM can be hard to treat, but they are having great success. There are so many new drugs being released and so many in trials that they expect it to become more like a chronic illness in the future. What you need to know is how to get mom to the future. Education and trusting her doc. I get velcade weekly, take dx weekly concurrant with the velcade and take revlimid on a 21 day on and 7 day off schedule. This is the aggressive maint. therapy after a stem cell transplant The transplant doctor set up the protacall , it goes for 11months after. I also get zoemeta for 2 years. They should do blood work weekly before treatment, if her counts go below 10 then they can give Procrit to boost the numbers and stimulate the bone marrow. I have been doing this since June 2011, but I have responded well and do tolerate the treatments well. Keep an eye on things as it becomes mundane and only through questions and answers do we keep things on track. Watch the abnormal protein and the IGG carefully, they should be checking these monthly, the numbers move slowly so most insurance companies will not pay for more frequent testing at the same facility. She should do better when she gets on the oral meds. however velcade is given subq injection, it reduces the side effects. Any bone damage will take time, quite often from what I have seen and read here and elsewhere any major issues will take surgery to repair, I hope this is not the case for your mom, but you may wish to be prepared. The most important thing at this point is to get the MM under control, you must stop the termite infestation before rebuilding the house. Don't expect fast results, it took 15 months before mine was low enough for a transplant, and mine was caught before I had any major issue's An annual checkup with an old friend who saved my life 15 years ago found it. MM can come from radiation therapy for Hodgekins. Most important thing here is to have faith and trust that all is as it should be and if it is a hard day wait for a better one. They will come, write things down, and keep a journal either here on in a book, it helps to look back and see how far you guys have come, it has helped me through some real tough times. Do not believe what you read on the internet as far as time frame for life expectancey as the numbers are not correct, quite often they still don't know because the trials are not complete. Tell mom to watch her weight and drink ensure or boost. I will send you a link for another site, it has life stories and tracks the clinical trials. Some times the trials help, while other times they are discouraging, but remember that they are just trials and are being used to learn. Thank God the search for a cure continues.
May God Bless and care for you guys as you both need his strength.
rodney
It started in my mom's back, too. From what I have seen with my mom -- keeping pain managed and keeping her hydrated are the 2 most important things.
For pain, she uses Fentanyl patches (because she hated morphine and every other pain med). Keeping her hydrated is much more difficult. I suggest tons of water (if possible -- setting goals helped my mom), eating melon everyday (outside washed very well before cutting), coconut water (Trader Joe's has a chocolate flavor if that helps), soup and any other hydrating foods and liquids. The occasional trip to the ER for a saline drip usually makes my mom feel better for a few days.
I would really suggest trying out pain meds till your mom finds what she likes and what keeps the pain away. For best life quality, she should not be in constant pain. Finding that right pain med for her is very important.
For my dad it only got worse unfortunately, but I think it is different with each person. My dad went from being able to walk to a cane to a walker then to a wheelchair. It has tough to watch such an active person struggle so much. My dad had a tumor the size of a softball crush his pelvis and it fractured his lower back. He took chemo by mouth and did radiation as well, but nothing would stop his tumor from growing. Every person experience is different with MM. It is such a hellish cancer though that doesn't show any mercy at least that was the case with my dad. He passed away 8 months after being diagnosed.
I hope that your mom sees the better :)
Thank you all so very much. This is great information.
Rose: I have learned that MM is not one disease, but several. When this is combined with our differences as individual humans, it is clear that the differences in how we each are affected by the disease are too many to predict. In my case, for example, my worst crisis so far was an anaphylactic shock reaction to one of the antiobotics used as part of the treatment protocol. This triggered a heart attack and near death experience. Things have leveled out a bit now except for struggle with the effects of dex on my cardiovascular system.
Net:Net… We are each different and each case is different so predicting your Mom’s journey is impossible.
Best wishes and prayers for her
Recovery!
Does anyone know of MM patients who did not go through chemo, who did not take the many drugs that are prescribed (except pain killers) and are doing o.k.? I just know that my mom suffered so much from Vecade and procrit and whatever else she was on and she still died after 3 years. What about medical marijuana?
Michie Slaughter said:
Rose: I have learned that MM is not one disease, but several. When this is combined with our differences as individual humans, it is clear that the differences in how we each are affected by the disease are too many to predict. In my case, for example, my worst crisis so far was an anaphylactic shock reaction to one of the antiobotics used as part of the treatment protocol. This triggered a heart attack and near death experience. Things have leveled out a bit now except for struggle with the effects of dex on my cardiovascular system.
Net:Net....... We are each different and each case is different so predicting your Mom's journey is impossible.
Best wishes and prayers for her
Recovery!
Hi Rose ,so sorry to hear about your Mom. I’ll tell you a little about me. I was diagnosed with MM in 2008 after having. 3 biopsys. I started chemotherapy that day and also was put on dex. That was in Nov. and after having 3sessions of that they said I was clean.I finished in Jan. but they said it would come back if I didn’t have a stem cell transplant.So I prepared for that and in May 2009 I had it done.That was 4years and 4 months ago. The only thing I really suffer from is neuropathy in my feet and legs. I still have to be checked every 6 months. So far so good.God Bless all of you suffering with this disease…
Oh, I am now 71years old …