Hi,
My boyfriend was diagnoised with multiple myeloma on 04/13/11. He has suffered terribly with continuous lower back and chest pain for 2 months now. He has no energy and sleeps alot when he gets home from work. He is taking Tramadol and Oxycodone for pain but nothing is relieving it completely. He started on Decadron this morning and waiting on his Revlimid to come in so he can start it. He'll have the Velcade this afternoon when we go back to the Oncologist. We will also get the Bone Marrow Biopsy results to tell us what stage he's in. The doctor said that when his body response well enough to the chemo (which they're thinking may be 5 months) he will then go to Duke for a Stem Cell Transplant.
As with anyone who has been diagnoised with Cancer knows, when you hear it for the first time your just numb. It's been a rough week for us both but our faith is strong and we know that we have to be postitive. It's just hard when your life has gone from being on the go and doing what you want to do whenever, to practically doing nothing but sleeping and feeling bad
constantly.
Can someone tell me what to expect after the chemo starts? How long does it take before the pain subsides? Will he feel alot better after the Stem Cell Transplant? Any help in answering these questions would be greatly appreciated.
Thank you,
Karen
Forums
-
ka1222 - Name: Karen
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: 04/13/11
- Age at diagnosis: 49
Re: Just diagnoised and start Chemo today
Hello Karen,
It's all so scary, the unexpected. One thing I can say, is every Myeloma sufferer, suffers in a different way and outcomes are always different. There are so many variations to this disease. Sitting next to someone in the doctor's waiting and listening to others stories will not help you in any way, unless you compare your labs and determine you have the exact same disease. Not helpful, right.
The dexamethasone will help a lot. I am on a dex full of energy high as we speak and I love it. The actual Revilmid I have found makes me very tired and fatigued, but you really have to fight it with whatever stamina is in your body. Just a little at a time, so this disease does not consume your life (speaking from experience here.) Try to be "normal", research healthy eating and habits and live life like you never have before!
Always, Tricia.
Living with multiple myeloma for 2 years now.
It's all so scary, the unexpected. One thing I can say, is every Myeloma sufferer, suffers in a different way and outcomes are always different. There are so many variations to this disease. Sitting next to someone in the doctor's waiting and listening to others stories will not help you in any way, unless you compare your labs and determine you have the exact same disease. Not helpful, right.
The dexamethasone will help a lot. I am on a dex full of energy high as we speak and I love it. The actual Revilmid I have found makes me very tired and fatigued, but you really have to fight it with whatever stamina is in your body. Just a little at a time, so this disease does not consume your life (speaking from experience here.) Try to be "normal", research healthy eating and habits and live life like you never have before!
Always, Tricia.
Living with multiple myeloma for 2 years now.
Re: Just diagnoised and start Chemo today
Hi Karen,
I'm so sorry you and your boyfriend are going through this. Like you, my boyfriend was diagnosed with multiple myeloma in September, 2010. I'm only slightly farther down this path than you are.
At time of diagnosis, EJ had pain in his ribs. You didn't mention what the results of your boyfriend's skeletal survey were. Does he have broken vertebrae or just lesions on his bones? Has the doctor suggested he start a bisphosphonate to improve his bone strength like Zometta? EJ is on Zometta and Velcade, both of which we were told would reduce the lesions on his ribs. After six cycles of Velcade/dex and monthly infusions of Zometta he does not seem to have anymore pain.
The big thing to watch for once he starts his treatment is peripheral neuropathy -- tingling or pain in the extremities. For some people, this can get quite bad, and it is not always reversable. It is important to let the doctor know as soon as starts having symptoms. Don't suck it up thinking it will go away! The docs will watch it to make sure it doesn't get too bad and they can adjust his treatments if they need to.
We found this one out the hard way -- if your boyfriend has not had shingles, talk to your doc about taking something to prevent them. One of the downsides of the Velcade is that it can cause an outbreak of shingles. EJ came home one night with a small rash on his stomach that turned out to be shingles. The nerve pain was worse than anything he had felt from the multiple myeloma!
I know how startling this diagnosis can be but things will get better, and you two will laugh and have good times again. As you learn more about multiple myeloma you will find that much is being done to improve the lives of multiple myeloma survivors. Although there is no cure (yet!) it is very manageable, and there are many promising treatments on the horizon.
All the best,
Lyn
I'm so sorry you and your boyfriend are going through this. Like you, my boyfriend was diagnosed with multiple myeloma in September, 2010. I'm only slightly farther down this path than you are.
At time of diagnosis, EJ had pain in his ribs. You didn't mention what the results of your boyfriend's skeletal survey were. Does he have broken vertebrae or just lesions on his bones? Has the doctor suggested he start a bisphosphonate to improve his bone strength like Zometta? EJ is on Zometta and Velcade, both of which we were told would reduce the lesions on his ribs. After six cycles of Velcade/dex and monthly infusions of Zometta he does not seem to have anymore pain.
The big thing to watch for once he starts his treatment is peripheral neuropathy -- tingling or pain in the extremities. For some people, this can get quite bad, and it is not always reversable. It is important to let the doctor know as soon as starts having symptoms. Don't suck it up thinking it will go away! The docs will watch it to make sure it doesn't get too bad and they can adjust his treatments if they need to.
We found this one out the hard way -- if your boyfriend has not had shingles, talk to your doc about taking something to prevent them. One of the downsides of the Velcade is that it can cause an outbreak of shingles. EJ came home one night with a small rash on his stomach that turned out to be shingles. The nerve pain was worse than anything he had felt from the multiple myeloma!
I know how startling this diagnosis can be but things will get better, and you two will laugh and have good times again. As you learn more about multiple myeloma you will find that much is being done to improve the lives of multiple myeloma survivors. Although there is no cure (yet!) it is very manageable, and there are many promising treatments on the horizon.
All the best,
Lyn
-
Christa's Mom - Name: Christa's Mom
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: September, 2010
- Age at diagnosis: 53
Re: Just diagnoised and start Chemo today
Karen: I'm so sorry for your boyfriend's recent diagnosis. I know neither of you planned on this "journey".
My husband (who was 72, at the time) was diagnosed 10/7/10 with Stage 3 Myeloma. He had no lesions but was considered High Risk. He was on Velcade/Dex for 6 months...and on his 6th month anniversary, we received a call from his Onc that he's in remission! So, keep the faith.
Just as Christa's Mom stated, hopefully your boyfriend is taking something for Shingles (a side-effect of Velcade). Bob takes 400 mg of Acyclovir, daily, and has had no problems. We were also warned that mouth sores could be an issue. Bob rinses with a mixture of water, soda and salt after each meal and at bedtime. (1 cup water, 1/4 tsp of soda, 1/4 tsp of salt). Better safe than sorry.
Dex causes his Blood Sugar to sky-rocket, but otherwise causes no problems. Probably the worst issue is the Neuropathy (Velcade) in the legs and feet, even after the dosage and frequency was reduced.
As others have said, each patient is different....and each case is different. Just stay strong, and hone your coping skills!!
Blessings,
My husband (who was 72, at the time) was diagnosed 10/7/10 with Stage 3 Myeloma. He had no lesions but was considered High Risk. He was on Velcade/Dex for 6 months...and on his 6th month anniversary, we received a call from his Onc that he's in remission! So, keep the faith.
Just as Christa's Mom stated, hopefully your boyfriend is taking something for Shingles (a side-effect of Velcade). Bob takes 400 mg of Acyclovir, daily, and has had no problems. We were also warned that mouth sores could be an issue. Bob rinses with a mixture of water, soda and salt after each meal and at bedtime. (1 cup water, 1/4 tsp of soda, 1/4 tsp of salt). Better safe than sorry.
Dex causes his Blood Sugar to sky-rocket, but otherwise causes no problems. Probably the worst issue is the Neuropathy (Velcade) in the legs and feet, even after the dosage and frequency was reduced.
As others have said, each patient is different....and each case is different. Just stay strong, and hone your coping skills!!
Blessings,
-
Sarah - Name: Sarah
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: October 7, 2010
- Age at diagnosis: 72
Re: Just diagnoised and start Chemo today
Tricia, Lyn and Sarah,
Thank you all so much for your replies. Even though we are all traveling this journey we'd rather not be on, it's comforting to know there's a place where we can pour our hearts out to each other and look for solice. I'm so sorry that all 3 of you are going through this.
Lyn, You ask about the Skeletal Survey. It showed lesions, and mostly on his spine and lower back area. It's stage II, but the doctor said not to focus so much on the stage. He said to be concerned with his body accepting the chemo like it needs to, to be able to get the Stem Cell Transplant. Along with the Velcade, he will also be on the Zometta once a month. Hopefully that will reduce the lesions and the pain.
Sarah, He was on Acyclovir but broke out friday really bad. We were scared it was shingles, but thank goodness it wasn't. The doctor took him off that and started him on Valtrex daily. He had a terrible fever blister on his bottom lip for a couple of weeks but it's finally amost gone. No sores inside his mouth but sunday he started noticing a really bad sulpher smell when he burped. It was horrible. Last night it seemed to be subsiding. He says that theres a bad taste in his mouth all the time now. He doesn't seem to have bad breathe though.
We will really watch for the Neuropathy Symptoms. That's scarey!
I would like to keep up with his lab values. I don't know how to do this yet. If any of you guys can help, I would appreciate it. Thank you so much for your comments and help. I have been
just overwhelmed by this whole thing. It really helps to talk to people who are going through
this.
Karen
Thank you all so much for your replies. Even though we are all traveling this journey we'd rather not be on, it's comforting to know there's a place where we can pour our hearts out to each other and look for solice. I'm so sorry that all 3 of you are going through this.
Lyn, You ask about the Skeletal Survey. It showed lesions, and mostly on his spine and lower back area. It's stage II, but the doctor said not to focus so much on the stage. He said to be concerned with his body accepting the chemo like it needs to, to be able to get the Stem Cell Transplant. Along with the Velcade, he will also be on the Zometta once a month. Hopefully that will reduce the lesions and the pain.
Sarah, He was on Acyclovir but broke out friday really bad. We were scared it was shingles, but thank goodness it wasn't. The doctor took him off that and started him on Valtrex daily. He had a terrible fever blister on his bottom lip for a couple of weeks but it's finally amost gone. No sores inside his mouth but sunday he started noticing a really bad sulpher smell when he burped. It was horrible. Last night it seemed to be subsiding. He says that theres a bad taste in his mouth all the time now. He doesn't seem to have bad breathe though.
We will really watch for the Neuropathy Symptoms. That's scarey!
I would like to keep up with his lab values. I don't know how to do this yet. If any of you guys can help, I would appreciate it. Thank you so much for your comments and help. I have been
just overwhelmed by this whole thing. It really helps to talk to people who are going through
this.
Karen
-
ka1222 - Name: Karen
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: 04/13/11
- Age at diagnosis: 49
Re: Just diagnoised and start Chemo today
Karen, we can relate to where you guys are now - We started this journey a year ago this month...it was a long 2010. With the help of excellent healthcare, The Beacon (forums and great articles by contributing editors and staff) and the grace of God, we are still here. It you go through all the forum titles you will find so much personal information as far as treatments, side effects, and support. Emotional roller coasters seem to be similar - we all started out scared beyond words. If I could offer a few suggestions they would be - continue your research - most recent - stay aware from anything older than say 2 or 3 years - keep a notebook with everything - ask for copies of all lab results - keep a daily log on how he feels (temps, blood pressure)- side effects - medication list and probably equally important - ask questions - you will become his advocate and voice. This notebook should go to the appointments and will be most helpful. Our very best to you both -- take one day at a time - and know we are all here as your sounding board. Rex & Kay
-
Kansas - Name: Rex
- Who do you know with myeloma?: self
- When were you/they diagnosed?: May 2010
- Age at diagnosis: 61
Re: Just diagnoised and start Chemo today
Rex and Kay,
Thank you for commenting. When he was diagnosised, I went home and started a daily journal. I have been updating it everyday and keeping track of all his symptoms. Last night was the worse night he's had so far. He laid down on the couch for awhile and then could barely get up. It took at least 5 minutes to get him set up and then it was all he could do to walk to the bedroom. He has another chemo treatment today and I'm going get copies of his labs and start tracking those.
It really is a rollercoaster ride. One minute I'm strong and the next I'm a basket case. It's hard to see the one you love so much, in so much pain! We are both strong in our faith and we have assurance that God will pull us through this fire. It's just a little mountain we have to cross first.
I wish you you both all the best in your journey. You'll be in my prayers. Are you in remission?
Have you already had a stem cell transplant?
Peace,
Karen
Thank you for commenting. When he was diagnosised, I went home and started a daily journal. I have been updating it everyday and keeping track of all his symptoms. Last night was the worse night he's had so far. He laid down on the couch for awhile and then could barely get up. It took at least 5 minutes to get him set up and then it was all he could do to walk to the bedroom. He has another chemo treatment today and I'm going get copies of his labs and start tracking those.
It really is a rollercoaster ride. One minute I'm strong and the next I'm a basket case. It's hard to see the one you love so much, in so much pain! We are both strong in our faith and we have assurance that God will pull us through this fire. It's just a little mountain we have to cross first.
I wish you you both all the best in your journey. You'll be in my prayers. Are you in remission?
Have you already had a stem cell transplant?
Peace,
Karen
-
ka1222 - Name: Karen
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: 04/13/11
- Age at diagnosis: 49
Re: Just diagnoised and start Chemo today
Karen, yes Rex had the stem cell transplant the end of October - first part of November - this was after 6 months of Velcade/Dex -- which brought him to sCR1 - after the transplant the transplant center lab said he had no M spike but the center where he received his Velcade treatments still showed some trace. His bone involvement was very low - 8% (brought down to 1%) - his main issue concerned the kidneys and also high blood pressure which affected the kidneys -- so again, everyone seems to be affected differently. The Velcade worked great - although we did have to have the dose reduced due to side affects (had a couple hospital stays). Give yourself time to adjust to all of this - and give yourself time to be a basket case. Some things you just cannot control but some things you can - it will help not only you but him -- because right now he needs that assurance. My prayers will be with you both also. Kay
-
Kansas - Name: Rex
- Who do you know with myeloma?: self
- When were you/they diagnosed?: May 2010
- Age at diagnosis: 61
Re: Just diagnoised and start Chemo today
Karen,
If you go to the International Myeloma Foundation website (www.myeloma.org) you can download their Myeloma Manager for free. It is a program to help you track test results and other medical information.
Hope it is helpful for you.
Janet
If you go to the International Myeloma Foundation website (www.myeloma.org) you can download their Myeloma Manager for free. It is a program to help you track test results and other medical information.
Hope it is helpful for you.
Janet
-
jsnow527 - Name: Janet
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: July 2006
- Age at diagnosis: 50
Re: Just diagnoised and start Chemo today
Greetings from New Mexico !
Regarding your boyfriend's pain and the question of how he will be feeling over the next few months and after a stem cell transplant:
Most myeloma patients have great improvement in their pain within weeks of starting treatment.Over the first few months I would expect for his pain to improve dramatically and possibly even to resolve. Early on after the diagnosis patients may need powerful painkillers to control the pain until the chemotherapy is doing its job. Do not hesitate to let the oncologist know how much he is suffering. Pain control is just as important as getting chemotherapy for him right now. The great majority of myeloma patients get significant relief from narcotics and bisphosphonates. Other pain control measures include local radiation therapy and kyphoplasty if he has suffered a compression fracture. These issues should be raised with his oncologist if they have not been discussed already.
Overall most myeloma patients feel dramatically better within a few months of starting therapy. Some do have chronic pain( but not as severe as when they are diagnosed) if they have had compression fractures in their spine.
He should be feeling much better well in advance of the transplant. If things go well he will continue to feel better for years after the transplant and the disease will be in control during that time. In 2011 the main effect of a stem cell transplant is to help the patient to achieve a long remission from multiple myeloma.
Regarding your boyfriend's pain and the question of how he will be feeling over the next few months and after a stem cell transplant:
Most myeloma patients have great improvement in their pain within weeks of starting treatment.Over the first few months I would expect for his pain to improve dramatically and possibly even to resolve. Early on after the diagnosis patients may need powerful painkillers to control the pain until the chemotherapy is doing its job. Do not hesitate to let the oncologist know how much he is suffering. Pain control is just as important as getting chemotherapy for him right now. The great majority of myeloma patients get significant relief from narcotics and bisphosphonates. Other pain control measures include local radiation therapy and kyphoplasty if he has suffered a compression fracture. These issues should be raised with his oncologist if they have not been discussed already.
Overall most myeloma patients feel dramatically better within a few months of starting therapy. Some do have chronic pain( but not as severe as when they are diagnosed) if they have had compression fractures in their spine.
He should be feeling much better well in advance of the transplant. If things go well he will continue to feel better for years after the transplant and the disease will be in control during that time. In 2011 the main effect of a stem cell transplant is to help the patient to achieve a long remission from multiple myeloma.
-
Dr. Edward Libby - Name: Edward Libby, M.D.
Beacon Medical Advisor
14 posts
• Page 1 of 2 • 1, 2