Thanks Rick,
Great points, I'll definitely adjust when treatment starts. Did your husband go back to low carb during the stem cell transplant? Did he stay off low carb during the whole induction therapy?
Funny, I think the dex helped me sleep better, I could definitely feel it. Maybe it was just the long day that helped me crash. That said, I did only get 8 hours or so of sleep (excluding the two times I got up to pee).
I'm just keeping really hydrated, which I suspect is what has taken my body sodium and chloride levels slightly below normal. I ate just a tiny bit of sea salt last night for that.
I really appreciate all of your great advice and encouragement. I promise to pay it forward.
I'm trying to get set up with an urgent appointment with UCSF for a second opinion on treatment before I get started, but fear that it won't happen in time and I'll just have to do it after the first induction treatment. The doctor at Stanford said that's still ok, and he just wants us to get started as quickly as possible.
Much Love
Forums
-
PositiveChris - Name: Chris
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 11/28/2016
- Age at diagnosis: 42
Re: Chris, 42, starting my journey
Thanks Darci,
We are in this together. Tell your husband that he has a lot of people wishing him well, and thank you for sharing your story. This forum has been my best resource for learning about multiple myeloma.
Sending good vibes and much love.
We are in this together. Tell your husband that he has a lot of people wishing him well, and thank you for sharing your story. This forum has been my best resource for learning about multiple myeloma.
Sending good vibes and much love.
-
PositiveChris - Name: Chris
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 11/28/2016
- Age at diagnosis: 42
Re: Chris, 42, starting my journey
Hi Chris,
Just want to say, I am thinking of you in these difficult days. You will go through it, and we are here for you. It's very hard at the beginning but it gets easier.
Just want to say, I am thinking of you in these difficult days. You will go through it, and we are here for you. It's very hard at the beginning but it gets easier.
-
Mojbahar - Name: M
- Who do you know with myeloma?: Self mgus
- When were you/they diagnosed?: Jully 2016
- Age at diagnosis: 48
Re: Chris, 42, starting my journey
Hi Chris.
We never really get to true ketogenic if I'm being honest, but we try to get as close as we can during his infusion-free week.
During induction and infusions and Revlimid he doesn't avoid fruit or grain. During the stem cell transplant, he was ketogenic (the transplant messed with his taste buds briefly in an interesting way; even water seemed sweet and he wanted no sugar). then his diet was all omega-3 and omega-6 and eggs and bone broth and a lot of herbs and spices and lentils and root veggies.
Now on maintenance we are again eating fruit and grain, less on our week off treatment injections.
He used a lot of antioxidants, including turmeric and matcha, during the stem cell transplant and over the summer. The matcha also on break currently (you need to avoid green tea with Velcade or Kyprolis).
You might want to read about turmeric; we use it daily (and now more cayenne and cinnamon as well).
He drank a lot of water at the point you are at and it was likely due to the elevated total protein and osmotic effects.
He also had one cycle of Revlimid, Velcade, and dexamethasone with our oncologist at Kaiser (in consult with Stanford) before we switched insurance and to UCSF, where he started Kyprolis, Revlimid, and dexamethasone (KRD). So don't worry about starting treatment ASAP. The specialists in the Bay Area are pretty respectful of each other.
Again. wishing you the best.
rick
We never really get to true ketogenic if I'm being honest, but we try to get as close as we can during his infusion-free week.
During induction and infusions and Revlimid he doesn't avoid fruit or grain. During the stem cell transplant, he was ketogenic (the transplant messed with his taste buds briefly in an interesting way; even water seemed sweet and he wanted no sugar). then his diet was all omega-3 and omega-6 and eggs and bone broth and a lot of herbs and spices and lentils and root veggies.
Now on maintenance we are again eating fruit and grain, less on our week off treatment injections.
He used a lot of antioxidants, including turmeric and matcha, during the stem cell transplant and over the summer. The matcha also on break currently (you need to avoid green tea with Velcade or Kyprolis).
You might want to read about turmeric; we use it daily (and now more cayenne and cinnamon as well).
He drank a lot of water at the point you are at and it was likely due to the elevated total protein and osmotic effects.
He also had one cycle of Revlimid, Velcade, and dexamethasone with our oncologist at Kaiser (in consult with Stanford) before we switched insurance and to UCSF, where he started Kyprolis, Revlimid, and dexamethasone (KRD). So don't worry about starting treatment ASAP. The specialists in the Bay Area are pretty respectful of each other.
Again. wishing you the best.
rick
-
rick - Name: rick
- Who do you know with myeloma?: husband
- When were you/they diagnosed?: nov 2015
- Age at diagnosis: 50
Re: Chris, 42, starting my journey
Rick,
Thanks so much for all the great info and perspective. It really helps.
At what point did the pain from your husband's lesions go away? Most of it is manageable for me, but my left arm and femur are really bothering me. I was hoping the dex would do something for it, but no luck yet. I did manage to walk a bit over a mile with my wife and mom last night thanks to the use of a cane they bought me at CVS. Guessing that once the induction starts, that should reduce more of the lesion pain?
I'll probably just start the day on Thursday with a banana and maybe a granola bar before I go into the hospital.
I bought a blood sugar tester, so that will be handy on they days they're not checking in the hospital.
Weight on Nov 23: 182 lbs
Weight today (Dec 3): 169 lbs
I'm hoping induction helps me get into a state where I can move better and want to eat more.
I started taking K2-M7 last night to help me absorb some of he calcium in my blood and rebuild those bones. Also taking D3 (1500 IU), milk thistle, curcumin, and a multivitamin.
Much Love
Thanks so much for all the great info and perspective. It really helps.
At what point did the pain from your husband's lesions go away? Most of it is manageable for me, but my left arm and femur are really bothering me. I was hoping the dex would do something for it, but no luck yet. I did manage to walk a bit over a mile with my wife and mom last night thanks to the use of a cane they bought me at CVS. Guessing that once the induction starts, that should reduce more of the lesion pain?
I'll probably just start the day on Thursday with a banana and maybe a granola bar before I go into the hospital.
I bought a blood sugar tester, so that will be handy on they days they're not checking in the hospital.
Weight on Nov 23: 182 lbs
Weight today (Dec 3): 169 lbs
I'm hoping induction helps me get into a state where I can move better and want to eat more.
I started taking K2-M7 last night to help me absorb some of he calcium in my blood and rebuild those bones. Also taking D3 (1500 IU), milk thistle, curcumin, and a multivitamin.
Much Love
-
PositiveChris - Name: Chris
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 11/28/2016
- Age at diagnosis: 42
Re: Chris, 42, starting my journey
Hi Chris,
My husband still has some boney pain but much less that October 2015 and he neither takes meds for pain regularly nor has it limited his rehabilitation. He has some variable neuropathic pain with treatments and when he overdoes exercise. He can still feel where his most aggressive lesions were at times but it seems more a fading memory.
He exercises a lot again - stretches consistently, does pilates, and hikes. He has started a little more strength training.
With his boney lesion locations, he was told not to aggressively exercise or overexert himself initially (the doctors were worried about his spine also) and got the green flag to resume biking and other activity after the stem cell transplant (7 months into treatment).
He just started acupuncture.
The myeloma treatment pretty quickly addressed most of his pain and how it limited his movement and even his sleep. He was so much better around the third cycle (I wish I could be specific but so much of last year is a blur). The treatment will help and your body will address the inflammation.
If you can, invest in a good adjustable bed. We went from a mountain of pillows and wedges to a bed that also massages.
We also installed a tub w/ air jets and a filtration system (to filter our bacteria, virus, mold) for our furnace. All made things easier.
Again, sending good thoughts.
rick
My husband still has some boney pain but much less that October 2015 and he neither takes meds for pain regularly nor has it limited his rehabilitation. He has some variable neuropathic pain with treatments and when he overdoes exercise. He can still feel where his most aggressive lesions were at times but it seems more a fading memory.
He exercises a lot again - stretches consistently, does pilates, and hikes. He has started a little more strength training.
With his boney lesion locations, he was told not to aggressively exercise or overexert himself initially (the doctors were worried about his spine also) and got the green flag to resume biking and other activity after the stem cell transplant (7 months into treatment).
He just started acupuncture.
The myeloma treatment pretty quickly addressed most of his pain and how it limited his movement and even his sleep. He was so much better around the third cycle (I wish I could be specific but so much of last year is a blur). The treatment will help and your body will address the inflammation.
If you can, invest in a good adjustable bed. We went from a mountain of pillows and wedges to a bed that also massages.
We also installed a tub w/ air jets and a filtration system (to filter our bacteria, virus, mold) for our furnace. All made things easier.
Again, sending good thoughts.
rick
-
rick - Name: rick
- Who do you know with myeloma?: husband
- When were you/they diagnosed?: nov 2015
- Age at diagnosis: 50
Re: Chris, 42, starting my journey
What a week. Started with MRI on Monday, which I was up all night thinking about. Ativan (lorazepam) to the rescue. I was in the MRI for about 90 minutes, and everything was fine. The MRI didn't find anything new, just lots of the lesions we already knew about from the PET.
I mostly took it easy, did some research. I managed to get into UCSF for an appointment and have decided to do my treatment there thanks to comments from Rick and others that I have spoken with or heard about. They are specialists, and my family felt really comfortable with them and the facility. Stanford is also great, and I am really lucky to have been able to choose between the two.
As of December 1
M-spike is up to 2.9 g/dL (29 g/l) from 2.4 g/dl
IgG up to 4200 mg/dL from 3365 mg/dL
Lambda free light chain level is up to 311 from 277.
The docs said it could be variance from lab to lab, but still concerning. I'll get the results from today's bloodwork in a few days. It will be interesting to see what impact the 40 mg of dex from last week had, if any.
One thing that was concerning last week was a spike in my total protein serum, which went from 8.7 to 11. It was back down to 9.6 today, so that's a good sign, even though it's still high. I've been drinking loads of water to keep flushing my system.
I should find out my micro-2 globulin number this week also and get some info on the genetics of the bone marrow. I'm currently only experiencing the B in CRAB, so I take that as a blessing right now.
I'm set to start treatment on Tuesday. Looks like a Revlimid, Velcade, and dexamethasone (RVD) induction regimen and we're targeting 4 cycles before an autologous stem cell transplant. They are also adding Zometa.
Good news that I probably don't need back surgery immediately, but we're going to keep an eye on my T12 and C2.
Between now and Tuesday, I have 4 doses of 20 mg dex (aka Tyrannosaurs Dex, according to the doctors) to look forward to. They also prescribed Zovirax (acyclovir) daily to prevent shingles, and asked me to start taking 325 mg of aspirin daily to prevent blood clots (which is great because I needed something for the leg/shoulder pain anyway).
Last night, I was very lucky to be able to go out despite my pain and meet a good friend for dinner. I even had a glass of wine. First "normal" thing for me in a few weeks. Looking forward to getting back to "normal" (or whatever the new normal is going to be).
Thanks everyone for the encouragement and great information. This forum is amazing.
Much Love
I mostly took it easy, did some research. I managed to get into UCSF for an appointment and have decided to do my treatment there thanks to comments from Rick and others that I have spoken with or heard about. They are specialists, and my family felt really comfortable with them and the facility. Stanford is also great, and I am really lucky to have been able to choose between the two.
As of December 1
M-spike is up to 2.9 g/dL (29 g/l) from 2.4 g/dl
IgG up to 4200 mg/dL from 3365 mg/dL
Lambda free light chain level is up to 311 from 277.
The docs said it could be variance from lab to lab, but still concerning. I'll get the results from today's bloodwork in a few days. It will be interesting to see what impact the 40 mg of dex from last week had, if any.
One thing that was concerning last week was a spike in my total protein serum, which went from 8.7 to 11. It was back down to 9.6 today, so that's a good sign, even though it's still high. I've been drinking loads of water to keep flushing my system.
I should find out my micro-2 globulin number this week also and get some info on the genetics of the bone marrow. I'm currently only experiencing the B in CRAB, so I take that as a blessing right now.
I'm set to start treatment on Tuesday. Looks like a Revlimid, Velcade, and dexamethasone (RVD) induction regimen and we're targeting 4 cycles before an autologous stem cell transplant. They are also adding Zometa.
Good news that I probably don't need back surgery immediately, but we're going to keep an eye on my T12 and C2.
Between now and Tuesday, I have 4 doses of 20 mg dex (aka Tyrannosaurs Dex, according to the doctors) to look forward to. They also prescribed Zovirax (acyclovir) daily to prevent shingles, and asked me to start taking 325 mg of aspirin daily to prevent blood clots (which is great because I needed something for the leg/shoulder pain anyway).
Last night, I was very lucky to be able to go out despite my pain and meet a good friend for dinner. I even had a glass of wine. First "normal" thing for me in a few weeks. Looking forward to getting back to "normal" (or whatever the new normal is going to be).
Thanks everyone for the encouragement and great information. This forum is amazing.
Much Love
-
PositiveChris - Name: Chris
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 11/28/2016
- Age at diagnosis: 42
Re: Chris, 42, starting my journey
Hi Chris,
Must admit, you're in my thoughts a lot these days. Hope you're holding up as well as can be expected <3
Must admit, you're in my thoughts a lot these days. Hope you're holding up as well as can be expected <3
-
countrygirl - Name: Countrygirl
- Who do you know with myeloma?: IgG MGUS
- When were you/they diagnosed?: September 2016
- Age at diagnosis: 35
Re: Chris, 42, starting my journey
Thank you!
Some good news – it looks like the dex alone has almost completely eliminated the subcutaneous plasmacytomas on my chest and clavicle. I'm also tolerating the dex well.
I will be starting induction therapy on Tuesday and have an appointment with the radiation doctor on Friday. I'm eager to get started.
Thinking about everyone who is on their journey.
Much love
Some good news – it looks like the dex alone has almost completely eliminated the subcutaneous plasmacytomas on my chest and clavicle. I'm also tolerating the dex well.
I will be starting induction therapy on Tuesday and have an appointment with the radiation doctor on Friday. I'm eager to get started.
Thinking about everyone who is on their journey.
Much love
-
PositiveChris - Name: Chris
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 11/28/2016
- Age at diagnosis: 42
Re: Chris, 42, starting my journey
Chris,
I have been reading your posts and I am sorry to hear you have been put on this path as you seem to be a very health-oriented guy. Just thought I might add a few things based on my knowledge.
I learned from my naturopath that clearing of the throat can be related to food sensitivities. Be aware of when this happens, say after breakfast. You can take digestive enzymes to help with this. I always cleared by throat, but no more, plus I became aware of foods that I was sensitive to and eliminated them temporarily or permanently, as you can decrease your sensitivity to them as you eat less of them. Ensure you get a good product with enzymes that work of fat / carbs / proteins.
The other thing that comes to mind is that you should see your dentist soon. If you have any dental work or just even need a cleaning, this is the time to do it, as when you research Zometa (zoledronic acid), you will learn about osteonecrosis of the jaw which can be a side effect.
On a positive note, my husband was diagnosed Feb 16 with IgG kappa free light chain multiple myeloma, low risk due to his cytogenetics, but with advanced bone lesions. He had radiation, which the lesions responded to very well, and after one 5 week cycle of cyclophosphamide, Velcade, and dexamethasone (CyBorD), he went into complete remission. His is 73, so not able to get a stem cell transplant, so he will be finishing up his 9th cycle mid Feb. His doctor told us that multiple myeloma is not curable but is HIGHLY treatable and we came to understand that early on in treatment. It sounds like you will be in very good hands. (We are in Canada.)
All the very best. Yes, a new normal for all of us..Wonderful to have the Beacon for support.
Many blessings, Lynda
I have been reading your posts and I am sorry to hear you have been put on this path as you seem to be a very health-oriented guy. Just thought I might add a few things based on my knowledge.
I learned from my naturopath that clearing of the throat can be related to food sensitivities. Be aware of when this happens, say after breakfast. You can take digestive enzymes to help with this. I always cleared by throat, but no more, plus I became aware of foods that I was sensitive to and eliminated them temporarily or permanently, as you can decrease your sensitivity to them as you eat less of them. Ensure you get a good product with enzymes that work of fat / carbs / proteins.
The other thing that comes to mind is that you should see your dentist soon. If you have any dental work or just even need a cleaning, this is the time to do it, as when you research Zometa (zoledronic acid), you will learn about osteonecrosis of the jaw which can be a side effect.
On a positive note, my husband was diagnosed Feb 16 with IgG kappa free light chain multiple myeloma, low risk due to his cytogenetics, but with advanced bone lesions. He had radiation, which the lesions responded to very well, and after one 5 week cycle of cyclophosphamide, Velcade, and dexamethasone (CyBorD), he went into complete remission. His is 73, so not able to get a stem cell transplant, so he will be finishing up his 9th cycle mid Feb. His doctor told us that multiple myeloma is not curable but is HIGHLY treatable and we came to understand that early on in treatment. It sounds like you will be in very good hands. (We are in Canada.)
All the very best. Yes, a new normal for all of us..Wonderful to have the Beacon for support.
Many blessings, Lynda
-
lyynda - Name: Lynda
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: March 2016
- Age at diagnosis: 72
21 posts
• Page 2 of 3 • 1, 2, 3
Return to Member Introductions / Personal Stories