I haven't been on here in a while, because I've been contemplating next steps. I am 48, and been battling multiple myeloma for 2 years, multiple doctors, three continents. My story's on here, so I won't repeat myself unnecessarily..
Having had my SCT in 2014, returning to work in April, and then experiencing what we think was a relapse in July 2014, I would say I've been through a lot. I was contemplating retirement. I'd about decided, and about a month ago, my memory came rushing back, flooding into my head. I mean I've heard amnesiacs have this experience and its overwhelming. That's when I knew I could go back.
I knew I still had work to do. The steroids are tough for me and I've gained 60 pounds or so since December. I felt like a big marshmallow. So my children and I joined our inexpensive but stellar community gyms and I was walking more, drinking more water, eating more fruits and veggies. It was working slowly, I'm getting my face and a little muscle tone back.
Then, about 2.5 weeks ago I started to have strange symptoms, some severe symptoms that I had during the two yearsof chemo, but heightened, and some that I didn't have before. I had radiation on the last lesion in my hip about a month ago. Only two weeks of it, thank God, because every day in the hospital for two weeks straight was worse than chemo.
Because I am atopic, I just learned, everything affects me. My family all have a tendency toward various allergies, but I'm unique. Since I was a kid, if I got sick which wasn't often, I got really sick. Scarlet fever; chicken pox at 24 (delirium), etc.. So when I went to what was going just a cursory Pet Scan to confirm that all lesions were gone, I put my legs up in the recliner and there were red splotches at the bottom. They were like hives, but sore underneath.
Over the next 48 hours, they swelled and spread up my body and showed up in my armpits. Thats when I started to panic and the fam went into emergency mode. My fantastic multiple myeloma specialist sent me to a dermatologist after guessing what it was. He said erythema nodosum - immunonodules. Had to look it up. My sugar wasnormal, bp normal, even with the excruciating pain - I thought it was shingles, because I couldn't walk by myself. Nope. They sent my blood work out to a special lab to find the underlying cause and said it was an infection. We're still working on that because everything has come back normal so far, not strep, my Ig#'s all normal, save one - the elusive IgE. Ought I wa nonsecretory, but I don't think so. We're running more tests, but I'm confident they'll find the cause. I think I'm IgE, but I don't care, I decided to return to work, working completely from home for a while, and let the docs figure it out.
We went over everything, from my mixed ancestry to my crazy extremes of illnesses. On my mom's side, we can trace back 7 generations to an Englishman n Charles City, whose family intermarried with members of the Pamunkey Native American tribe and 'black' people. On my dad's side, we can't go back as far, but we know there's Ghanian blood there. So I'm special and blessed. My doctor listened to all it and saw how I was suffering. The outbreak has lessened, I'm still hobbling and armpit nodules are gone. We're sharing stories in the fam trying to figure it out, but I'm feeling so much better that the return to work is exciting to contemplate.
Does anyone have experiences similar to this? I'd love to hear your thoughts. Happy 4th!
Forums
10 posts
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JinMingDao - Name: Kim
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: April 2014
- Age at diagnosis: 46
Re: Roller Coaster and Return to work
I forgot to mention the strangest symptom, I was bright red and burning inside from head to toe. I felt cool, except for my face, but it felt like was my blood boiling. No fever, yet the fam would touch me and felt the burning. I also initaially couldn't stand a light cotton sheet on one shin, it felt like the skin was coming off. I also initially had pain from small of my back to my ankles, and sharp pain in my lower leg woke me up. That's a first - it's very rare that I can't sleep.
Weird huh? I think you get the idea...
Weird huh? I think you get the idea...
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JinMingDao - Name: Kim
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: April 2014
- Age at diagnosis: 46
Re: Roller Coaster and Return to work
JinMingDao wrote:
Hey JMD
My dad gets something (not as severe and mostly from the neck and up) like you describe the day after he gets his CyBorD (cyclophosphamide, Velcade, and dex) treatment.
I forgot to mention the strangest symptom, I was bright red and burning inside from head to toe. I felt cool, except for my face, but it felt like was my blood boiling. No fever, yet the fam would touch me and felt the burning.
Hey JMD
My dad gets something (not as severe and mostly from the neck and up) like you describe the day after he gets his CyBorD (cyclophosphamide, Velcade, and dex) treatment.
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Little Monkey - Name: Little Monkey
- Who do you know with myeloma?: Father-stage 1 multiple myeloma
- When were you/they diagnosed?: March/April of 2015
Re: Roller Coaster and Return to work
Hey! That's how it started. Flushing from chest level up has been in my symptoms due to steroids since the transplant at least. But it was different. I was boiling underneath. When it started to spread to my whole body, I knew this was different and so did they.
They've changed my regimen a couple of timesthis go-round, so we just sat talking about differences for a while. Changed my shampoo (no), stopped taking lasik (no), shingles or the clinical trial (no). Radiation (no), systemic reaction not necessarily allergies (maybe). I talked gingerly about the fact that there were no clinical trials of which I'm aware that include nonsecretory people of color, and even if we find one, my mix is unique.
I'm on Cy-Kyprolis-D, Zometa, and just antiviral meds and allergy really. Baffling. He sad underlying infection, fabulous dermatologists agreed, and I think I mentioned the rest. I'll let y'all know what happens. From an engineer/scientist perspective, it's fascinating, but I'm ready for no.more.drama. Long road.
They've changed my regimen a couple of timesthis go-round, so we just sat talking about differences for a while. Changed my shampoo (no), stopped taking lasik (no), shingles or the clinical trial (no). Radiation (no), systemic reaction not necessarily allergies (maybe). I talked gingerly about the fact that there were no clinical trials of which I'm aware that include nonsecretory people of color, and even if we find one, my mix is unique.
I'm on Cy-Kyprolis-D, Zometa, and just antiviral meds and allergy really. Baffling. He sad underlying infection, fabulous dermatologists agreed, and I think I mentioned the rest. I'll let y'all know what happens. From an engineer/scientist perspective, it's fascinating, but I'm ready for no.more.drama. Long road.
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JinMingDao - Name: Kim
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: April 2014
- Age at diagnosis: 46
Re: Roller Coaster and Return to work
Could it be the dex that is causing these issues?
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Little Monkey - Name: Little Monkey
- Who do you know with myeloma?: Father-stage 1 multiple myeloma
- When were you/they diagnosed?: March/April of 2015
Re: Roller Coaster and Return to work
Dexamethasone causes me neck and facial flushing every time, without fail.
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Tracy J - Name: Tracy Jalbuena
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 2014
- Age at diagnosis: 42
Re: Roller Coaster and Return to work
Hi Kim,
Like Tracy, I too, experienced flushing (accompanied by a sensation of warmth) on my face and upper body when using dex.
Also, I hesitate to mention this as it is probably not pertinent in your case, but when I was chemically forced into menopause a few years ago – after undergoing chemotherapy for breast cancer – the hot flashes and flushing that I experienced were very severe. For about a year after undergoing chemo, I would experience dizzying hot flashes numerous times a day, during which I would become red and hot to touch in the upper body, my heart rate would increase, and I’d experience a sensation of being totally engulfed in flames.
Our bodies take a beating from the drugs we must take in order to keep our myeloma at bay, and I do hope that you can get to the bottom of this.
All the best,
Karen
Like Tracy, I too, experienced flushing (accompanied by a sensation of warmth) on my face and upper body when using dex.
Also, I hesitate to mention this as it is probably not pertinent in your case, but when I was chemically forced into menopause a few years ago – after undergoing chemotherapy for breast cancer – the hot flashes and flushing that I experienced were very severe. For about a year after undergoing chemo, I would experience dizzying hot flashes numerous times a day, during which I would become red and hot to touch in the upper body, my heart rate would increase, and I’d experience a sensation of being totally engulfed in flames.
Our bodies take a beating from the drugs we must take in order to keep our myeloma at bay, and I do hope that you can get to the bottom of this.
All the best,
Karen
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KarenaD - Name: Karen
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: November 4, 2015
- Age at diagnosis: 54
Re: Roller Coaster and Return to work
Thanks all for your advice!
Karen, save the immunonodules, your symptoms sound very close to mine. I don't mind menopausal symptoms, but I need to be able to walk without pain.
For now, we have good news. The head-to-toe flushing and the immunonodules (erythema nodosum) are gone after round-the-clock Benadryl (diphenhydramine) and ibuprofen. While we haven't found the underlying cause yet, I feel better every day. All of my bloodwork came back negative, other tests are pending. The doc said they might study my family as we're so unique. I don't think he was kidding.
The last lesion that was irradiated in my hip is smaller, and the doc said it should be completely gone or thereabouts at the next PET scan in a couple months. Yea!
I'm a little wobbly while walking still, but I'm back to the normal flushing, thank God, and I take Benadryl when it starts to cut any symptoms off at the pass before they exacerbate. Seems to be working so far.
We did a return to work plan, and I can work completely from home for 3 months with reevaluation every month after that. No finances or benefits change, thank God. No worries on that front.
I'll keep you posted on what we find. Thanks all!
Kim
Karen, save the immunonodules, your symptoms sound very close to mine. I don't mind menopausal symptoms, but I need to be able to walk without pain.
For now, we have good news. The head-to-toe flushing and the immunonodules (erythema nodosum) are gone after round-the-clock Benadryl (diphenhydramine) and ibuprofen. While we haven't found the underlying cause yet, I feel better every day. All of my bloodwork came back negative, other tests are pending. The doc said they might study my family as we're so unique. I don't think he was kidding.
The last lesion that was irradiated in my hip is smaller, and the doc said it should be completely gone or thereabouts at the next PET scan in a couple months. Yea!
I'm a little wobbly while walking still, but I'm back to the normal flushing, thank God, and I take Benadryl when it starts to cut any symptoms off at the pass before they exacerbate. Seems to be working so far.
We did a return to work plan, and I can work completely from home for 3 months with reevaluation every month after that. No finances or benefits change, thank God. No worries on that front.
I'll keep you posted on what we find. Thanks all!
Kim
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JinMingDao - Name: Kim
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: April 2014
- Age at diagnosis: 46
Re: Roller coaster and return to work
Hi all,
I have enjoyed reading your posts. I am a 54 year old male and have had multiple myeloma for 2.5 years. Prior to being diagnosed, I was in tip top shape. It was a source of pride for me. Like JinMingDao, I have gained weight 20 pounds. My knee-jerk reaction is to exercise more. Yesterday I did 2 cardios and a strength. I worked for 3 hours and was so tried I thought I would rest for an hour until my next meeting. I ended up cancelling all meetings and sleeping for 4 hours. My wife tells me I have to pace myself, and I know that logically, but I have such a hard time having a pot belly. But I am the sole source of support for my family (7 children), so I have to be able to do my job.
Bottom line, thanks for your posts! I helps me realize that others feel the same as I do. I am committed to pacing my workouts and reserving my strength for work and my family. Prayer has been big for me and gives me hope. I know that God has helped me.
My love and best wishes go to all of you.
I have enjoyed reading your posts. I am a 54 year old male and have had multiple myeloma for 2.5 years. Prior to being diagnosed, I was in tip top shape. It was a source of pride for me. Like JinMingDao, I have gained weight 20 pounds. My knee-jerk reaction is to exercise more. Yesterday I did 2 cardios and a strength. I worked for 3 hours and was so tried I thought I would rest for an hour until my next meeting. I ended up cancelling all meetings and sleeping for 4 hours. My wife tells me I have to pace myself, and I know that logically, but I have such a hard time having a pot belly. But I am the sole source of support for my family (7 children), so I have to be able to do my job.
Bottom line, thanks for your posts! I helps me realize that others feel the same as I do. I am committed to pacing my workouts and reserving my strength for work and my family. Prayer has been big for me and gives me hope. I know that God has helped me.
My love and best wishes go to all of you.
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KellyKal
Re: Roller Coaster and Return to work
Keep pushing and thanks for your kind words!
Without God, friends, and family I wouldn't have made it this far. Try not to worry, somehow the financial part worked its way out, through friends, long-term disability, and social cancer programs.
Without God, friends, and family I wouldn't have made it this far. Try not to worry, somehow the financial part worked its way out, through friends, long-term disability, and social cancer programs.
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JinMingDao - Name: Kim
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: April 2014
- Age at diagnosis: 46
10 posts
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