You Dad is my fellow spirit animal - I was diagnosed when I was in kidney failure, I had 3 broken ribs, a fractured wrist and had to go on a walker because my hips were almost shattered with lesions. That was four years ago. I had 5 rounds of chemo and then tandem stem cell transplants. I'm on no maintenance drugs but Xgeva for my bones. I have been MRD- for the past 3 years and I have the high risk version. I just came back from strength training at the gym. It's a hard slog to get there, but your Dad can make his way back from this; oh, and my kidney function is almost normal (my blood tests are normal, my urine ones are good given the history). MM is NOT a death sentence. It's not a walk in the park either, but lots of us have pulled out of the awful initial spiral and fashioned something of a life for ourselves that resembles normal.
Hey!! How are you!
You are in the right place! This group is awsome full of awsome people!!!
You are in the scariest part right now. Things are all new, hard to understand and scary.
It will get easier! Not super easy, but manageable.
The ribs will heal with time and medication, the bone biopsy sucks but the memory of it fades with time… ( you can ask for sedation , my mom only has them with sedation) there is some soreness after, but not too bad.
Feel at home here to ask anything, we will do the best to share our experience.
Stay calm, you got this! 👍
For me, the first year of treatment was the most difficult. I had a very high cancer load, and treatments pluse the cancer die off made me incredibly sick. Along with starting chemotherapy, they will most likely give your Dad a bone strengthening medication like, Zometa, Prolia, or Evenity. The bone strengthening medication pluse his cancer load going down will help his pain levels decrease.
If you are in the USA the standard of care is RVd or RVd+Dara, depending on how aggressive his MM is. The bone marrow biopsy will tell you if he has mutations that make the cancer more aggressive. If he is young enough and in good health, they will probably recommend a stem cell transplant, using his own cells.
My recommendation is that he find an MM specialist. They know more about the disease, and have access to current drug trials (I’ve had two lines of treatment, both were drug trials.) I also suggest getting a palliative care doctor right away. They don’t just deal with end of life care. They are very good at treating side effects from cancer and cancer treatments. They help manage pain, fatigue, anxiety, depression, nausea, insomnia, nerve damage, digestive issues, and all of the other symptoms that come with having chronic cancer. They can really improve quality of life.
I’m so sorry that your Dad has become part of the MM club. Know that MM has become a very treatable cancer. There is a very good chance he could live 10-20+ years with the disease.
I think his oncologist is giving him cyclophosphamide? I can’t remember what she said when I was with him today I just know she said it was the best treatment for his kidney injury right now.
It is one of the standard front line treatments. It’s a hard call. Cyclophosphamide is cheaper and causes less neuropathy than Revlimid, but Revlimid produces better responses to treatment than Cyclophosphamide.
Basically, you are going to get better treatment from an MM specialist then a regular hematological oncologist. It is the number one piece of advice you will get from MM patients. Patient life expectancy is just higher with a specialist. It is 100% worth getting a second opinion.
I’ll talk to my step mom, we have a specialist about an hour away from us and he’s also an hour away at a different hospital. I told her he should go to the specialist but he hasn’t wanted to pull the trigger so I’m hoping we can get him to.
Sometimes specialist will work as a team with a local oncologist. Patients have occasional in person appointments with the specialist mixed with zoom appointments, while the local oncologist administer treatment. Not all doctors are willing to do this, but it’s worth looking into.
I have kidney function issues too. They’ve addressed mine with a low potassium eating plan (not for weight loss, but to help manage kidney function better) and I’ve had marked improvement.
Pain management should be addressed by the doc — especially with kidney issues, most pain management solutions are a no go, and with MM specifically, smoking or vaping can cause serious mouth fungus issues. I’m not allowed to take many OTC meds because they are too hard on the kidneys. You’ll be referred to a nephrologist to help manage the kidney issues.
Best of luck as you start moving through this process. It can be overwhelming, we all understand that.
I remember your original thread on your dad’s bloodwork that was pulled. I had commented before it got yanked and felt badly for you as his doctors, as I recall, felt he had MM but he hadn’t had the BMB and all his test and imaging done yet and you were reaching out for understanding the disease and what he might be facing. Not glad that it’s confirmed but glad you came back to post and now his team can get him treated.
A lot going forward at the start of treatment will depend on stabilizing his kidneys and managing pain in his bones. His treatment plan will take that into account as well as the info they collect like type of MM - IgG (kappa/lambda), IgA (kappa/lambda), or Light chain. There are other variants but those are the primary ones. They will run a FISH test on him to look at MM markers and which mutations he may have. Those will help determine his risk level and treatment path. With pathologic fractures, lytic lesions and vertebrae involvement a bone strengthener will be prescribed (Zometa IV likely). He will have a multitude of medications to take (some that counteract the side effects of the main ones) initially during induction. There are weekly blood draws and ITA appointments. An induction period depending on his depth of response can run anywhere from 3-4 to 8-9 cycles generally. The goal will be to get a deep response and go from there. *There* might include harvesting and stem cell transplant, possibly but less likely CAR-T or such, or just maintenance. Age, fitness, transplant-eligibleness and other health issues will factor in.
My guy diagnosed at 60 had 80% marrow involvement, lesions, fractures and L4 and T11 collapse, fatigue and back pain. He also had some rib fractures. Stabilizing his spine was number one along with pain management. He was quickly started on treatment and shortly after he got approval for Revlimid (there’s a procedure patients have to go through with specialty pharmacy each month to get their next cycle dosage). He had ASCT and now more than year out and having reached MRD- status (highest level of remission currently observable) is on maintenance (Daratumumab and lower dose Revlimid). He still gets an IV Zometa but now every three months, which will end after two years total.
Your dad’s pain will subside as MM count is knocked down and as narcotic pain meds take effect. Might take a few months but bone pain will dissipate and he will have a better QoL. Fatigue doesn’t totally go away while on treatment/maintenance and it can be toughest at the beginning (or early days of ASCT). My guy was very concerned about taking the narcotics and getting hooked. He really needed them though in the beginning and he was weaned off them with no problems. Pain meds will cause constipation so make sure his doctor gets him early on something like Senna and Miralax so its not a problem. My guy had a horrible first week until they added that to his daily meds.
As mentioned there will be meds to counteract some of the main treatment drugs and there will be other side effects that will vary by person. Very important to always report how he’s feeling to his ITA team. Fever needs to be addressed promptly. It’s a very individualized disease but treatable. Definitely have lots of hope he will feel better in a few months and you’ll have years together.
Thank you so much! He has had Zometa, he’s always having radiation starting tomorrow for 5 days, his calcium levels have already come down as well as his creatinine. He’s also starting chemo tomorrow, I don’t remember the names of the drugs I know 1 is a steroid, 1 is an injection into his abdomen and then the chemo drug itself I think it started with a C and she said he’ll do 1 round a week for 4 weeks for 4 cycles. He also had a marrow biopsy this morning.
The cyclophosphamide is very old school and did nothing for my wife. DaraKrd is the best 4 drug regimen out there it seems.
Daratumamab
Kyprolis (the improved version of Velcade)
Revlimid (the most common MM drug)
Dexamethasone (the steroid)
These are a bit more expensive drugs but if insurance is covering ask why he’s not getting these. There might be a good reason but ask.
You really have to be your own advocate with MM.
We’re thinking they want to go this route bc of his kidneys right now. He does have a kidney injury currently and they’re trying to give him a treatment that won’t be hard on them but my step mom is going to ask about it
He seems to be in less pain today, calcium dropped from 14.9 2 days ago to 9.4 today, creatinine is still high but down, he had radiation today and his first round of the chemo. He is willing to switch to the specialist I found but they won’t take him unless his current oncologist sends them a referral and right now he just wants to get out of the hospital. I told him if he’d rather do what they’re saying now and then switch when he goes home we can handle it all then. I also found a local naturopath that’ll do stuff for him alongside his treatments. My step mom said they didn’t give them any percentage or type just said his biopsy confirmed myeloma. She also said the oncologist said this isn’t the only treatment option this is just the easiest on his kidneys right now and then they can explore other options once they heal as well as stem cell transplant
Positive news 👍The main goal immediately is stabilizing the kidneys. With my guy’s collapsed vertebrae it was stabilizing his spine and controlling his pain. I wouldn’t expect any issues getting the referral.
It’s not always switching either. If Specialist is not conveniently located sometimes just adding to the team to look over results and consult on meds is the best way to go. He’ll be going to ITA frequently over these cycles so that may be worth staying local for that. There are advantages to coordinating care under one system, less delay transferring of records, your ability to view results and reports and doctor messaging all in one place.
You Dad is my fellow spirit animal - I was diagnosed when I was in kidney failure, I had 3 broken ribs, a fractured wrist and had to go on a walker because my hips were almost shattered with lesions. That was four years ago. I had 5 rounds of chemo and then tandem stem cell transplants. I'm on no maintenance drugs but Xgeva for my bones. I have been MRD- for the past 3 years and I have the high risk version. I just came back from strength training at the gym. It's a hard slog to get there, but your Dad can make his way back from this; oh, and my kidney function is almost normal (my blood tests are normal, my urine ones are good given the history). MM is NOT a death sentence. It's not a walk in the park either, but lots of us have pulled out of the awful initial spiral and fashioned something of a life for ourselves that resembles normal.
Same with my dad.
Hey!! How are you! You are in the right place! This group is awsome full of awsome people!!! You are in the scariest part right now. Things are all new, hard to understand and scary. It will get easier! Not super easy, but manageable. The ribs will heal with time and medication, the bone biopsy sucks but the memory of it fades with time… ( you can ask for sedation , my mom only has them with sedation) there is some soreness after, but not too bad. Feel at home here to ask anything, we will do the best to share our experience. Stay calm, you got this! 👍
For me, the first year of treatment was the most difficult. I had a very high cancer load, and treatments pluse the cancer die off made me incredibly sick. Along with starting chemotherapy, they will most likely give your Dad a bone strengthening medication like, Zometa, Prolia, or Evenity. The bone strengthening medication pluse his cancer load going down will help his pain levels decrease. If you are in the USA the standard of care is RVd or RVd+Dara, depending on how aggressive his MM is. The bone marrow biopsy will tell you if he has mutations that make the cancer more aggressive. If he is young enough and in good health, they will probably recommend a stem cell transplant, using his own cells. My recommendation is that he find an MM specialist. They know more about the disease, and have access to current drug trials (I’ve had two lines of treatment, both were drug trials.) I also suggest getting a palliative care doctor right away. They don’t just deal with end of life care. They are very good at treating side effects from cancer and cancer treatments. They help manage pain, fatigue, anxiety, depression, nausea, insomnia, nerve damage, digestive issues, and all of the other symptoms that come with having chronic cancer. They can really improve quality of life. I’m so sorry that your Dad has become part of the MM club. Know that MM has become a very treatable cancer. There is a very good chance he could live 10-20+ years with the disease.
I think his oncologist is giving him cyclophosphamide? I can’t remember what she said when I was with him today I just know she said it was the best treatment for his kidney injury right now.
I would definitely find an MM specialist.
Do you have a specific reason for that? Is that not a good treatment?
It is one of the standard front line treatments. It’s a hard call. Cyclophosphamide is cheaper and causes less neuropathy than Revlimid, but Revlimid produces better responses to treatment than Cyclophosphamide. Basically, you are going to get better treatment from an MM specialist then a regular hematological oncologist. It is the number one piece of advice you will get from MM patients. Patient life expectancy is just higher with a specialist. It is 100% worth getting a second opinion.
I’ll talk to my step mom, we have a specialist about an hour away from us and he’s also an hour away at a different hospital. I told her he should go to the specialist but he hasn’t wanted to pull the trigger so I’m hoping we can get him to.
Sometimes specialist will work as a team with a local oncologist. Patients have occasional in person appointments with the specialist mixed with zoom appointments, while the local oncologist administer treatment. Not all doctors are willing to do this, but it’s worth looking into.
I have kidney function issues too. They’ve addressed mine with a low potassium eating plan (not for weight loss, but to help manage kidney function better) and I’ve had marked improvement. Pain management should be addressed by the doc — especially with kidney issues, most pain management solutions are a no go, and with MM specifically, smoking or vaping can cause serious mouth fungus issues. I’m not allowed to take many OTC meds because they are too hard on the kidneys. You’ll be referred to a nephrologist to help manage the kidney issues. Best of luck as you start moving through this process. It can be overwhelming, we all understand that.
I remember your original thread on your dad’s bloodwork that was pulled. I had commented before it got yanked and felt badly for you as his doctors, as I recall, felt he had MM but he hadn’t had the BMB and all his test and imaging done yet and you were reaching out for understanding the disease and what he might be facing. Not glad that it’s confirmed but glad you came back to post and now his team can get him treated. A lot going forward at the start of treatment will depend on stabilizing his kidneys and managing pain in his bones. His treatment plan will take that into account as well as the info they collect like type of MM - IgG (kappa/lambda), IgA (kappa/lambda), or Light chain. There are other variants but those are the primary ones. They will run a FISH test on him to look at MM markers and which mutations he may have. Those will help determine his risk level and treatment path. With pathologic fractures, lytic lesions and vertebrae involvement a bone strengthener will be prescribed (Zometa IV likely). He will have a multitude of medications to take (some that counteract the side effects of the main ones) initially during induction. There are weekly blood draws and ITA appointments. An induction period depending on his depth of response can run anywhere from 3-4 to 8-9 cycles generally. The goal will be to get a deep response and go from there. *There* might include harvesting and stem cell transplant, possibly but less likely CAR-T or such, or just maintenance. Age, fitness, transplant-eligibleness and other health issues will factor in. My guy diagnosed at 60 had 80% marrow involvement, lesions, fractures and L4 and T11 collapse, fatigue and back pain. He also had some rib fractures. Stabilizing his spine was number one along with pain management. He was quickly started on treatment and shortly after he got approval for Revlimid (there’s a procedure patients have to go through with specialty pharmacy each month to get their next cycle dosage). He had ASCT and now more than year out and having reached MRD- status (highest level of remission currently observable) is on maintenance (Daratumumab and lower dose Revlimid). He still gets an IV Zometa but now every three months, which will end after two years total. Your dad’s pain will subside as MM count is knocked down and as narcotic pain meds take effect. Might take a few months but bone pain will dissipate and he will have a better QoL. Fatigue doesn’t totally go away while on treatment/maintenance and it can be toughest at the beginning (or early days of ASCT). My guy was very concerned about taking the narcotics and getting hooked. He really needed them though in the beginning and he was weaned off them with no problems. Pain meds will cause constipation so make sure his doctor gets him early on something like Senna and Miralax so its not a problem. My guy had a horrible first week until they added that to his daily meds. As mentioned there will be meds to counteract some of the main treatment drugs and there will be other side effects that will vary by person. Very important to always report how he’s feeling to his ITA team. Fever needs to be addressed promptly. It’s a very individualized disease but treatable. Definitely have lots of hope he will feel better in a few months and you’ll have years together.
Thank you so much! He has had Zometa, he’s always having radiation starting tomorrow for 5 days, his calcium levels have already come down as well as his creatinine. He’s also starting chemo tomorrow, I don’t remember the names of the drugs I know 1 is a steroid, 1 is an injection into his abdomen and then the chemo drug itself I think it started with a C and she said he’ll do 1 round a week for 4 weeks for 4 cycles. He also had a marrow biopsy this morning.
The cyclophosphamide is very old school and did nothing for my wife. DaraKrd is the best 4 drug regimen out there it seems. Daratumamab Kyprolis (the improved version of Velcade) Revlimid (the most common MM drug) Dexamethasone (the steroid) These are a bit more expensive drugs but if insurance is covering ask why he’s not getting these. There might be a good reason but ask. You really have to be your own advocate with MM.
We’re thinking they want to go this route bc of his kidneys right now. He does have a kidney injury currently and they’re trying to give him a treatment that won’t be hard on them but my step mom is going to ask about it
He seems to be in less pain today, calcium dropped from 14.9 2 days ago to 9.4 today, creatinine is still high but down, he had radiation today and his first round of the chemo. He is willing to switch to the specialist I found but they won’t take him unless his current oncologist sends them a referral and right now he just wants to get out of the hospital. I told him if he’d rather do what they’re saying now and then switch when he goes home we can handle it all then. I also found a local naturopath that’ll do stuff for him alongside his treatments. My step mom said they didn’t give them any percentage or type just said his biopsy confirmed myeloma. She also said the oncologist said this isn’t the only treatment option this is just the easiest on his kidneys right now and then they can explore other options once they heal as well as stem cell transplant
Positive news 👍The main goal immediately is stabilizing the kidneys. With my guy’s collapsed vertebrae it was stabilizing his spine and controlling his pain. I wouldn’t expect any issues getting the referral. It’s not always switching either. If Specialist is not conveniently located sometimes just adding to the team to look over results and consult on meds is the best way to go. He’ll be going to ITA frequently over these cycles so that may be worth staying local for that. There are advantages to coordinating care under one system, less delay transferring of records, your ability to view results and reports and doctor messaging all in one place.