Lower back pain led me to see a orthopedic doctor and later to a chiropractor after it flared up again. This was back in April. In addition I started having nausea. So far, not bad. But in mid-May, with my appetite down, I started to vomit a lot. Went into work one morning and I could not keep anything down.
I left the office and headed to the hospital. Thought something was up.
By that Monday evening, my blood work showed very high kidney values. I was put on a liquid diet, given fluids via IV, and admitted. When the numbers did not go down over a few days, I got a temporary catheter so I could begin dialysis. The diagnosis was acute renal failure. Scary, but only the beginning.
In addition to dialysis, I got a kidney biopsy. And then the discussion moved over to multiple myeloma, though nothing was certain yet. Next up was a PET scan and a bone marrow biopsy, you know where they drill into your back with a corkscrew while you are awake. Not fun.
The diagnosis did come back as multiple myeloma. Apparently the light chains in my blood are well over the limit and mess up the kidneys. Hearing this news was horrible. Having to tell my wife that it is cancer (she was not present when they first mentioned it to me), was the worst thing I ever had to do. I began chemo while still at Maryland Medical Center.
I was in the hospital for 12 days. Now I go to outpatient dialysis 3 days a week, and have chemo infusions 2 days a week during a cycle. There is some down time between cycles but then I still go to the hospital for blood work and all that good stuff. You don't know how tired of needles and pills I am at this time.
Today I see my oncologist and should begin cycle 3, He may switch up the treatments based on my numbers. Who knows. All I can say is my life hit a wall 6 weeks ago and nothing is the same.
I did go back to work PT, but with my treatment schedule and the side effects, it is hard. I try to do about 20-25 hours a week but am not always successful. Not feeling well and not being able to shower because of my chest catheter is much worse. Plus I have lost circa 20 pounds since all this started. It may be a cliche, but I am already sick and tired of being sick and tired.
Renee and I trudge forward and I follow all my doctors' orders. Will beat this and I have a ton of support from family and friends. Will keep you all posted on how I am doing as I time goes on.
Forums
-
petecool - Name: Peter Coolbaugh
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: May 2016
- Age at diagnosis: 41
Re: Came from nowhere
I'm sorry you had to join this forum but glad you found it and posted. It is invaluable! If you have read other posts when people are first diagnosed, you will hear regularly advice that you have a myeloma specialist as part of your care team. If a specialist is not in your area, it is common to travel to see a myeloma specialist periodically, while the treatment plan and standard check-ups are done by local hematologist/oncologist. If you let the forum know where you live, they can make recommendations on specialists.
Also, many people can recover from kidney involvement.
I am wishing you the best. There is a lot of great work going on in the quest to cure multiple myeloma, and I am hopeful this will occur in the next couple of years.
Also, many people can recover from kidney involvement.
I am wishing you the best. There is a lot of great work going on in the quest to cure multiple myeloma, and I am hopeful this will occur in the next couple of years.
Re: Came from nowhere
Pete,
Have you considered switching your shower head to a hand shower head? That way you can direct the stream of water away from your upper chest. A shower stool to sit on is a useful investment too.
Have you considered switching your shower head to a hand shower head? That way you can direct the stream of water away from your upper chest. A shower stool to sit on is a useful investment too.
-
cdnirene - Name: Irene S
- Who do you know with myeloma?: me
- When were you/they diagnosed?: September 2014
- Age at diagnosis: 66
Re: Came from nowhere
Hi Pete:
I am so sorry that you and your wife are having to go through this, and wish you the very best.
In your message, you state that you are receiving treatment at "Maryland Medical Center". Do you mean University of Maryland Medical Center (UMMC)? If so, I am also currently receiving treatment there. I received my stem cell transplant there on May 13th, and the care I received from the medical staff was outstanding.
I believe that we are fortunate to live in a part of the country with medical facilities like UMMC and Johns Hopkins.
Kathleen
I am so sorry that you and your wife are having to go through this, and wish you the very best.
In your message, you state that you are receiving treatment at "Maryland Medical Center". Do you mean University of Maryland Medical Center (UMMC)? If so, I am also currently receiving treatment there. I received my stem cell transplant there on May 13th, and the care I received from the medical staff was outstanding.
I believe that we are fortunate to live in a part of the country with medical facilities like UMMC and Johns Hopkins.
Kathleen
-
kshornb - Name: kshornber
- Who do you know with myeloma?: self
- When were you/they diagnosed?: July 2015
- Age at diagnosis: 52
Re: Came from nowhere
Sorry you are having to go down this road. My husband was diagnosed at age 58 this last December. He had four months of treatment with Cytoxan, Velcade, and dexamethasone (CyBorD) and had a stem cell transplant June 3rd. He was also diagnosed following back and rib pain and kidney involvement.
Good luck to you!
Good luck to you!
-
dogmom - Who do you know with myeloma?: husband
- When were you/they diagnosed?: December 2015
- Age at diagnosis: 58
Re: Came from nowhere
Kathleen,
Yes, I am at the Greenebaum Cancer Center at UMMC in Baltimore. On Friday, I was told my Velcade approach, which did well after round 1, was no longer working. So I will be switched to a new regimen starting next week, pending insurance approval.
What is worse is that the light chain numbers went back up, which also means my kidneys will take longer to heal. O man, I hate dialysis and having the catheter in my chest. I will just remain patient and stay the course I guess.
Yes, I am at the Greenebaum Cancer Center at UMMC in Baltimore. On Friday, I was told my Velcade approach, which did well after round 1, was no longer working. So I will be switched to a new regimen starting next week, pending insurance approval.
What is worse is that the light chain numbers went back up, which also means my kidneys will take longer to heal. O man, I hate dialysis and having the catheter in my chest. I will just remain patient and stay the course I guess.
-
petecool - Name: Peter Coolbaugh
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: May 2016
- Age at diagnosis: 41
Re: Came from nowhere
Hi Pete:
It is very nice to meet someone who is also going to the Greenebaum clinic.
I am so sorry to hear that the Velcade is no longer effective. Did they say what they were trying next (if you don't mind my asking)? My doctor had mentioned that I will be starting Revlimid soon (July 27th), and if that does not work to keep me in remission, he will recommend adding Ninlaro, and dexamethasone.
I hope that things improve for you very soon. This diagnosis can be so difficult, and I know it's hard to stay patient when things don't seem to be improving quickly, but keep the faith. They have so many new drugs, and therapies, and I think we have some of the best myeloma specialists in the country.
Kathleen
It is very nice to meet someone who is also going to the Greenebaum clinic.
I am so sorry to hear that the Velcade is no longer effective. Did they say what they were trying next (if you don't mind my asking)? My doctor had mentioned that I will be starting Revlimid soon (July 27th), and if that does not work to keep me in remission, he will recommend adding Ninlaro, and dexamethasone.I hope that things improve for you very soon. This diagnosis can be so difficult, and I know it's hard to stay patient when things don't seem to be improving quickly, but keep the faith. They have so many new drugs, and therapies, and I think we have some of the best myeloma specialists in the country.
Kathleen
-
kshornb - Name: kshornber
- Who do you know with myeloma?: self
- When were you/they diagnosed?: July 2015
- Age at diagnosis: 52
Re: Came from nowhere
Kathleen hello.
Starting this week I will be getting the KRD approach, which is the combination of Kyprolis, Revlimid, and low-dose dexamethasone. I hope this is more successful than the last stuff.
I am confident in my care at UMMC but, like any other person, I worry about my future.
Plus, having to do dialysis three times a week really sucks.
We will see how it goes.
Starting this week I will be getting the KRD approach, which is the combination of Kyprolis, Revlimid, and low-dose dexamethasone. I hope this is more successful than the last stuff.
I am confident in my care at UMMC but, like any other person, I worry about my future.
Plus, having to do dialysis three times a week really sucks.
We will see how it goes.
-
petecool - Name: Peter Coolbaugh
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: May 2016
- Age at diagnosis: 41
Re: Came from nowhere
Hi Pete,
Also diagnosed May 2016. I am 53, was getting headaches and a sore jaw. I am on Velcade, cyclophosphamide and dexamethasone.
When diagnosed my serum free kappa light chains were 12,083.
Because the treatment overworks the kidneys, I was given allopurinol to reduce uric acid and help my kidneys. Don't know if you have tried that.
I'm sure you are drinking plenty, I drink water all through the night as well and go to the toilet 6 or 8 times during the night.
Become a routine and now my light chains are down to 110 after 2 months treatment so maybe that helps.
Good luck.
Regards,
Mike
New Zealand
Also diagnosed May 2016. I am 53, was getting headaches and a sore jaw. I am on Velcade, cyclophosphamide and dexamethasone.
When diagnosed my serum free kappa light chains were 12,083.
Because the treatment overworks the kidneys, I was given allopurinol to reduce uric acid and help my kidneys. Don't know if you have tried that.
I'm sure you are drinking plenty, I drink water all through the night as well and go to the toilet 6 or 8 times during the night.
Become a routine and now my light chains are down to 110 after 2 months treatment so maybe that helps.
Good luck.
Regards,
Mike
New Zealand
-
Mike13 - Name: Mike
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 14/05/16
- Age at diagnosis: 53
Re: Came from nowhere
Update: as of last week, I am in complete remission. All my numbers, including my light chains, are normal or just about. And the new bone marrow biopsy revealed that I am clear, especially when compared to my one last April.
Bad news: no change really in kidneys. But I did switch to dialysis at home - peritoneal dialysis in late October. It sucks but it is better than hemodialysis.
Now beginning prep work for autologous stem cell transplant, to happen hopefully in March.
Bad news: no change really in kidneys. But I did switch to dialysis at home - peritoneal dialysis in late October. It sucks but it is better than hemodialysis.
Now beginning prep work for autologous stem cell transplant, to happen hopefully in March.
-
petecool - Name: Peter Coolbaugh
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: May 2016
- Age at diagnosis: 41
12 posts
• Page 1 of 2 • 1, 2
Return to Member Introductions / Personal Stories