We’d love to hear from you: did you experience any of Ray’s treatment path? Any tips to give others on losing your hair and/or undergoing a stem cell transplant?
Wow, I wish I had seen this when I first started my treatment. Especially the mental health part of it. I couldn't explain to my wife how I was feeling or why I was so tired.
Thank you Ray! I just finished my velcade cycles and next week it is my stem cell harvesting and in mid December I have my BMT. I appreciate hearing your journey and wish you the best. There is only one way to go and that is forward!
Thank you for sharing these stories. As a caregiver, you don’t often understand what the patient is dealing with since they don’t have the energy or desire to share while they’re going through it. I’m trying to learn as much as possible to be the best at caring for my sister sans this interview was very helpful.
Thanks for sharing your experience, Ray! I'm on cycle four: velcade twice a week, DARA once a week, dexamethasone two days a week, and revlimid. I had to be reduced from revlimid 25 mg. to 10 mg. My numbers are coming way down. Hoping for the stem cell transplant! I get very similar reactions as Ray with an added one: I'm always super dizzy. I use aloe vera and hydrocortisone on the red welts from the velcade injection sites. I find using lots of unscented lotion helps with the revlimid rashes. I find eating a lot helps with tummy ache and diarrhea. I'm scared of the nausea you talk about. 😮 How long does rhe nausea last? Great tip! I'll order a pill crusher. Omg, the chemo goes straight into your heart? Im glad you're doing well!
Hi Ray/Steph, Ray you just described my own experience of having the treatments for MM! It was like listening to me, it really was. I am now in remission and on maintenance treatments. Still get the fatigue and the occasional night sweat and my appetite isn't great. Good luck to you my friend and I hope you live a long, happy life. God bless.
having mm, I'm finishing the 3rd cycle of the 4 drugs this week. Worst things: foot neuropathy not fun, especially burning heels. DVT was not fun, but got fixed with blood thinners. Tinittus is sometimes crazy. Insomnia is probably the worst side effect. BUT: the good thing is: there is a treatment for every side effect and they generally work. If you can get get daily foot massage, that definately helps. Sedatives for insomnia helps. The absolute best you can do is: get your 5000 steps in in the morning right after you wake up, as the foot neuropathy gets worse as the day progresses. Also, you can do stationary bike with balls of foot and that works fine, since the prob is mostly in the heels. I happen to love prunes, so 4 or 5 in the morn before the DEX is a good habit to avoid constipation. Having pain meds on hand and only taking them if needed is a good idea. Lucky, the bone pain is gone so I don't need pain meds. Food tastes terrible; I recommend COLD oatmeal mixed with frozen blueberries or frozen black cherries. I have the bone marrow transplant coming up in a month or so, so I'll cross that bridge when I get to it. For boring times at home I recommend the Meta Quest 3 VR, it can totally transport you to a spectacular other world and it's worth every penny. You can even lie in bed and travel the solar system, visiting all the moons and planets in super high def 3d.
My hubby with aggressive multi myeloma genetic, has had same regimen as of Ray’s, no side like his, though. No nausea, not sure of all his med, he did have revlemid, and doxamethaxone, I don’t know the names of the others. He was tired leaving induction center, loss of sleep that night, and flushing next day. We have a consultation for stem cell transplant.
I am not able to take velcade due to my heart issues. I do take Revlimid daily. I am taking Darzalex by drip. I did get hives, but not sure which one cause the hives. Have only done 1 cycle of induction therapy and a few days into my cycle 2.
Vicki, I have not take Darzalex. But, Revlimid, in particular the high doses I took in my induction therapy, did give me skin rashes. Up high, in my chest, around my neck and all. Claritin seemed to help, as I recall. Currently, I take Xyzal daily to try to keep rashes and hives away. It works for the most part. Occasionally, a get a single hive or two on my forearms. If there's ever anything I can do for you, Vicki, please let me know. Together we're stronger! #PunchTodayInTheFace!
@@RayHartjen I was taken off Revlimid 25mg for Cycle 2, but was restarted with Revlimid 15mg for cycle 3. So far no hives. I am now doing every 2 weeks for Darzalex. I am getting a good response and my bloodwork is good.
My fathers diagnosis is most likely to be myeloma as the doctor has already said .. i just wonder at the age of 76 how well treatment goes 😢😢😢 .also we are in the UK so hearing g all these great testimonials makes me a bit ancious to think how prepared they are here when treating patients with this desease 😢
I've not eaten a lot of red meat for years. My diagnosis only furthers that. I try to eat a lot of fruits and vegetables. For protein, I eat chicken and fish. I prefer whole foods over other options. And, I've cut back my alcohol and sugar intake a bit (although sometimes I slip up there). Cancer cells, like all cells, love sugar.
This is a tough one. When going through my stem cell transplant, I was nauseous, and I also had a bit of an ulcer at the back of my throat. Getting big pills down was a challenge. I found luck with a pill cutter. Also, crushing a pill up and spooning it back with a little sorbet was helpful for me.
I'm concerned about my weight because I'm only 128 pounds and I'm 5' 7". I need to not lose any weight so can you give me any suggestions as to what I could eat when I don't really feel like eating when I'm going through treatment? I'm scared of losing too much weight and then not being able to fight this. Would fruit shakes be good?
When I was nauseous, I found myself gravitating to things that were cool and wet. I'd recommend you have a variety of foods available if you're experiencing nausea. I thought I'd plan out my meals exactly, and I discovered that was a big mistake (for me). I didn't want anything I had planned. A great cook book is The Cancer-Fighting Kitchen, by Mat Edelson and Rebecca Katz. Lots of good recipes. Don't think you need to be a hero at the dinner table. You don't need to eat a giant plate of food. Just eat what you can, when you can. Try many smaller meals over the course of the day. And, yes, fruit shakes are great. Get some fresh or frozen fruit, some ice/juice, and maybe some protein power and fire it up in a blender. Keep your weight up and be sure to exercise too. Feeling strong really helps my mental attitude, and attitude can carry you through a great many of your days. Keep fighting!
BREAKFAST: i will have 2 boiled eggs, 1 avocado, 1 toast, and a cup of milk. Sometimes oat Milk with almond and blueberry and 1 eggs SNACKS: fruits and nuts. Sometime crackers and cheese. Soya milk or smoothie with greek yogurt, banana, carrots, beets, mixed berry and chia seeds. LUNCH: soups or broth, 35:10 corn or sweet potatoes, Broccoli AFTERNOON SNACK: Greek yogurt, berries and granola with almond Dinner rice, pasta,quinoa, chicken, salmon, beef, tofu and Vegs. In between I will have a bowl of broth . I eat a lot of beef for my hemoglobin and blood pressure. I can’t eat seafood any more. I have rash. Try to drink o lot of chicken or beef broth. It helps to keep your weight. Sometime I have to eat small portions. I had a lower back fracture too. I couldn’t move for weeks. Now I better. Today I have appointment for my stem cell, hopefully everything goes well.
Multiple Myeloma is no longer an old man disease. My big question is why? I truly hope they find a cure for you very soon. At 75 I am nowpositive for MGUS and more evaluations to come. At my age should I be officially diagnosed with MM a month from now I got a big decision to make. And it will be very tough. Not so much for me; as I had a good life and I am not afraid of leaving this earth; this being said I will probably accept treatment because my loving wife said I cannot leave her.
Strength to you and yours, Thomas. There are varieties in treatments of multiple myeloma. Not everyone goes on the track to a bone marrow transplant, and a lot of factors go into developing a regimen, including age and general health. Let me know if you ever want to chat. #PunchTodayIntheFace
@@RayHartjen If you may help me can I ask a question if you are having any information? My dad has been diagnosed with MM 2 weeks after misdiagnosed for a few months, he’s diabetic and has hypertension plus he survived stroke 8 years ago and he is on metformin bp medication aspirin and simvastatin he lost a lot of weight and weak right now his spine started to erode because of the cancer and his age is 65 so we really don’t know to start chemotherapy right now or I am just worried weather he can survive the side effects of chemo or I am really stressed to the point that I can’t function properly if you enlighten me to some extent that would be helpful and I apologise for my English as I am not good at it.
@@አሚሙን I'm sorry to hear about your father's diagnosis. It's a club that I don't like welcoming new members into. Your father will likely undergo an induction therapy to begin - the RVD protocol. R is for Revlimid, a capsule taken in varying doses, 3-4 weeks on a cycle with another week off. For me, it caused skin rashes and other relatively mild side effects. V is for Velcade, an injection one a week or so. That caused side effects at the location of the injection for me, but, again, relatively mild. D is for the steroid dexamethasone. That dose is pretty high, and patients have varying degrees of side effects. But, again, those side effects are relatively mild. The RVD induction treatment doesn't usually have the extreme nausea, intestinal issues, fatigue, etc. as big doses of chemotherapy. Now, if the myeloma has spread into his bones, he might have to undergo some radiation treatment. I can't speak to side effects there, but I believe it's mostly skin irritation and burning. Under medical guidance with regards to dosages, your father is young enough to go through those treatments well. That induction period may be all he needs, depending on his case. If he does need a stem cell transplant in the future, the induction therapy will not only begin to fight his myeloma, but it will also buy him time to gain his strength, regain some lost weight, and prepare himself for potentially big doses of chemotherapy. I feel my cancer fight involves four different aspects - physical, mental emotional and spiritual. They all work together, and I look to maintain them at high levels. It makes me feel better, and when I feel better, I fight cancer at my best. Help your father in those four areas. Don't let one be a strength while the other three fall behind. Nurture them all, and let your father know that he has you, me, and others fighting right alongside him. He's not alone. He is one of a tribe, and we stick together!
We’d love to hear from you: did you experience any of Ray’s treatment path? Any tips to give others on losing your hair and/or undergoing a stem cell transplant?
Wow, I wish I had seen this when I first started my treatment. Especially the mental health part of it. I couldn't explain to my wife how I was feeling or why I was so tired.
Thank you Ray! I just finished my velcade cycles and next week it is my stem cell harvesting and in mid December I have my BMT. I appreciate hearing your journey and wish you the best. There is only one way to go and that is forward!
We're in this together, one tribe! Take care, be well, and please do let me know if there's anything I can do for you!
Thank you for sharing these stories. As a caregiver, you don’t often understand what the patient is dealing with since they don’t have the energy or desire to share while they’re going through it. I’m trying to learn as much as possible to be the best at caring for my sister sans this interview was very helpful.
Ray, you have a beautiful smile!
Thanks for sharing your experience, Ray! I'm on cycle four: velcade twice a week, DARA once a week, dexamethasone two days a week, and revlimid. I had to be reduced from revlimid 25 mg. to 10 mg. My numbers are coming way down. Hoping for the stem cell transplant! I get very similar reactions as Ray with an added one: I'm always super dizzy. I use aloe vera and hydrocortisone on the red welts from the velcade injection sites. I find using lots of unscented lotion helps with the revlimid rashes. I find eating a lot helps with tummy ache and diarrhea. I'm scared of the nausea you talk about. 😮 How long does rhe nausea last? Great tip! I'll order a pill crusher. Omg, the chemo goes straight into your heart? Im glad you're doing well!
Thanks Ray for your honesty and input. Good step for moving forward - rashes especially.
Hi Ray/Steph, Ray you just described my own experience of having the treatments for MM! It was like listening to me, it really was. I am now in remission and on maintenance treatments. Still get the fatigue and the occasional night sweat and my appetite isn't great. Good luck to you my friend and I hope you live a long, happy life. God bless.
Thanks for sharing the journey. God bless 👍
My pleasure, Gokul, and thank you for the kind words. Together we're stronger, and if there's ever anything I can do for you, please do let me know.
having mm, I'm finishing the 3rd cycle of the 4 drugs this week. Worst things: foot neuropathy not fun, especially burning heels. DVT was not fun, but got fixed with blood thinners. Tinittus is sometimes crazy. Insomnia is probably the worst side effect. BUT: the good thing is: there is a treatment for every side effect and they generally work. If you can get get daily foot massage, that definately helps. Sedatives for insomnia helps. The absolute best you can do is: get your 5000 steps in in the morning right after you wake up, as the foot neuropathy gets worse as the day progresses. Also, you can do stationary bike with balls of foot and that works fine, since the prob is mostly in the heels. I happen to love prunes, so 4 or 5 in the morn before the DEX is a good habit to avoid constipation. Having pain meds on hand and only taking them if needed is a good idea. Lucky, the bone pain is gone so I don't need pain meds. Food tastes terrible; I recommend COLD oatmeal mixed with frozen blueberries or frozen black cherries. I have the bone marrow transplant coming up in a month or so, so I'll cross that bridge when I get to it. For boring times at home I recommend the Meta Quest 3 VR, it can totally transport you to a spectacular other world and it's worth every penny. You can even lie in bed and travel the solar system, visiting all the moons and planets in super high def 3d.
Can i get your number so that i can communicate as my father also been diagnosed with multiple myeloma
Can we get updates on these people?
My hubby with aggressive multi myeloma genetic, has had same regimen as of Ray’s, no side like his, though. No nausea, not sure of all his med, he did have revlemid, and doxamethaxone, I don’t know the names of the others. He was tired leaving induction center, loss of sleep that night, and flushing next day. We have a consultation for stem cell transplant.
I am not able to take velcade due to my heart issues. I do take Revlimid daily. I am taking Darzalex by drip. I did get hives, but not sure which one cause the hives. Have only done 1 cycle of induction therapy and a few days into my cycle 2.
Vicki, I have not take Darzalex. But, Revlimid, in particular the high doses I took in my induction therapy, did give me skin rashes. Up high, in my chest, around my neck and all. Claritin seemed to help, as I recall. Currently, I take Xyzal daily to try to keep rashes and hives away. It works for the most part. Occasionally, a get a single hive or two on my forearms. If there's ever anything I can do for you, Vicki, please let me know. Together we're stronger! #PunchTodayInTheFace!
@@RayHartjen I was taken off Revlimid 25mg for Cycle 2, but was restarted with Revlimid 15mg for cycle 3. So far no hives. I am now doing every 2 weeks for Darzalex. I am getting a good response and my bloodwork is good.
Thank you for this video. Did you continue on chemo after the SCT ?
My fathers diagnosis is most likely to be myeloma as the doctor has already said .. i just wonder at the age of 76 how well treatment goes 😢😢😢 .also we are in the UK so hearing g all these great testimonials makes me a bit ancious to think how prepared they are here when treating patients with this desease 😢
What is your diet like? Did you change it when you got that diagnosis or are you just eat regular food
I've not eaten a lot of red meat for years. My diagnosis only furthers that. I try to eat a lot of fruits and vegetables. For protein, I eat chicken and fish. I prefer whole foods over other options. And, I've cut back my alcohol and sugar intake a bit (although sometimes I slip up there). Cancer cells, like all cells, love sugar.
How are you supposed to keep pills down if you're vomiting them up
This is a tough one. When going through my stem cell transplant, I was nauseous, and I also had a bit of an ulcer at the back of my throat. Getting big pills down was a challenge. I found luck with a pill cutter. Also, crushing a pill up and spooning it back with a little sorbet was helpful for me.
Hi Ray. My name is Dean Hill. My brother was just diagnosis with Multiple Myeloma. Would love to him connect with you.
I'm concerned about my weight because I'm only 128 pounds and I'm 5' 7". I need to not lose any weight so can you give me any suggestions as to what I could eat when I don't really feel like eating when I'm going through treatment? I'm scared of losing too much weight and then not being able to fight this. Would fruit shakes be good?
When I was nauseous, I found myself gravitating to things that were cool and wet. I'd recommend you have a variety of foods available if you're experiencing nausea. I thought I'd plan out my meals exactly, and I discovered that was a big mistake (for me). I didn't want anything I had planned. A great cook book is The Cancer-Fighting Kitchen, by Mat Edelson and Rebecca Katz. Lots of good recipes. Don't think you need to be a hero at the dinner table. You don't need to eat a giant plate of food. Just eat what you can, when you can. Try many smaller meals over the course of the day. And, yes, fruit shakes are great. Get some fresh or frozen fruit, some ice/juice, and maybe some protein power and fire it up in a blender. Keep your weight up and be sure to exercise too. Feeling strong really helps my mental attitude, and attitude can carry you through a great many of your days. Keep fighting!
BREAKFAST: i will have 2 boiled eggs, 1 avocado, 1 toast, and a cup of milk.
Sometimes oat Milk with almond and blueberry and 1 eggs
SNACKS: fruits and nuts. Sometime crackers and cheese. Soya milk or smoothie with greek yogurt, banana, carrots, beets, mixed berry and chia seeds.
LUNCH: soups or broth, 35:10 corn or sweet potatoes, Broccoli
AFTERNOON SNACK: Greek yogurt, berries and granola with almond
Dinner rice, pasta,quinoa, chicken, salmon, beef, tofu and Vegs.
In between I will have a bowl of broth . I eat a lot of beef for my hemoglobin and blood pressure. I can’t eat seafood any more. I have rash. Try to drink o lot of chicken or beef broth. It helps to keep your weight. Sometime I have to eat small portions. I had a lower back fracture too. I couldn’t move for weeks. Now I better. Today I have appointment for my stem cell, hopefully everything goes well.
Multiple Myeloma is no longer an old man disease. My big question is why? I truly hope they find a cure for you very soon.
At 75 I am nowpositive for MGUS and more evaluations to come.
At my age should I be officially diagnosed with MM a month from now I got a big decision to make. And it will be very tough. Not so much for me; as I had a good life and I am not afraid of leaving this earth; this being said I will probably accept treatment because my loving wife said I cannot leave her.
Strength to you and yours, Thomas. There are varieties in treatments of multiple myeloma. Not everyone goes on the track to a bone marrow transplant, and a lot of factors go into developing a regimen, including age and general health. Let me know if you ever want to chat. #PunchTodayIntheFace
@@RayHartjen If you may help me can I ask a question if you are having any information? My dad has been diagnosed with MM 2 weeks after misdiagnosed for a few months, he’s diabetic and has hypertension plus he survived stroke 8 years ago and he is on metformin bp medication aspirin and simvastatin he lost a lot of weight and weak right now his spine started to erode because of the cancer and his age is 65 so we really don’t know to start chemotherapy right now or I am just worried weather he can survive the side effects of chemo or I am really stressed to the point that I can’t function properly if you enlighten me to some extent that would be helpful and I apologise for my English as I am not good at it.
@@አሚሙን I'm sorry to hear about your father's diagnosis. It's a club that I don't like welcoming new members into. Your father will likely undergo an induction therapy to begin - the RVD protocol. R is for Revlimid, a capsule taken in varying doses, 3-4 weeks on a cycle with another week off. For me, it caused skin rashes and other relatively mild side effects. V is for Velcade, an injection one a week or so. That caused side effects at the location of the injection for me, but, again, relatively mild. D is for the steroid dexamethasone. That dose is pretty high, and patients have varying degrees of side effects. But, again, those side effects are relatively mild. The RVD induction treatment doesn't usually have the extreme nausea, intestinal issues, fatigue, etc. as big doses of chemotherapy. Now, if the myeloma has spread into his bones, he might have to undergo some radiation treatment. I can't speak to side effects there, but I believe it's mostly skin irritation and burning. Under medical guidance with regards to dosages, your father is young enough to go through those treatments well. That induction period may be all he needs, depending on his case. If he does need a stem cell transplant in the future, the induction therapy will not only begin to fight his myeloma, but it will also buy him time to gain his strength, regain some lost weight, and prepare himself for potentially big doses of chemotherapy. I feel my cancer fight involves four different aspects - physical, mental emotional and spiritual. They all work together, and I look to maintain them at high levels. It makes me feel better, and when I feel better, I fight cancer at my best. Help your father in those four areas. Don't let one be a strength while the other three fall behind. Nurture them all, and let your father know that he has you, me, and others fighting right alongside him. He's not alone. He is one of a tribe, and we stick together!
The nausea issue sounds like pregnancy to me 😓