My 75 year old father saw an hematologist on October 24th re. anemia, extreme fatigue and a drop in his kidney function (He already was at 40% due to diabetes but saw it drop to 25%). Hematologist ordered test for paraproteins but told us he is on vacation for 3 weeks-follow up booked for November 18th.
Last night took him to hospital for nausea and fatigue plus chest/rib pain. Chest x-ray clear, but given 2 units of blood. Went for regular nephrology appointment today. Nephrologist had run his own paraprotein test and it came back positive for Bence Jones proteins. Nephrologist told us in all probability he has myeloma.
I know other test are required to ultimately confirm vs lymphoma, but I think everything points to myeloma.
My dad has been very ill the last week. Cannot eat due to nausea, has absolutely no energy, blood sugar levels are all over the place. He is getting worse by the day. Now that we have a probable diagnosis, do you think we should wait 18 days to see the hematologist or go directly to a hospital and let them know what is going on? Can he get significantly worse over this short period of time?
Forums
Re: Delay in seeing oncologist
Don't delay!
-
Justine - Name: Justine Ryder
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: August 2013
Re: Delay in seeing oncologist
That sounds very much like my experience minus the diabetes, but my kidney function was lower in spite of it. I too had/have Bence Jones and it effected my kidneys and physical being much the same way.
I was sent to the hospital for a week immediately and went on dialysis then.
I was sent to the hospital for a week immediately and went on dialysis then.
-
Wayne K - Name: Wayne
- Who do you know with myeloma?: Myself, my sister who passed in '95
- When were you/they diagnosed?: 03/09
- Age at diagnosis: 70
Re: Delay in seeing oncologist
Thank you very much for your replies. His kidney function is not at dialysis level yet-although he is going to the kidney clinic next week for an education session. He is just very sick-fatigue, pain, dizziness. The hospital discharged him without knowing the about the positive result for the Bence Jones proteins. So right now we have a positive test and more than 2 weeks to see the hematologist.
-
John mc
Re: Delay in seeing oncologist
John, I don't know where you are located. However, if you are someplace where there may be multiple hematologists/oncologists who you could choose from, I would see if you could get an appointment sooner for your father.
With his kidney function deteriorating, I don't think you want to wait longer than necessary.
With his kidney function deteriorating, I don't think you want to wait longer than necessary.
-
JimNY
Re: Delay in seeing oncologist
Thanks again for your replies. I took him to another hospital that has a regional cancer centre attached. He was very weak/dizzy and could not stand. After waiting 8 hours in emergency of course all of his bloodwork was good (except measures of kidney function-which we knew prior as he is diabetic). CT scan of his head was normal as was his chest x-ray. Physician was nice but basically was saying we should wait to see his hematologist (who we have no relationship with other than to meet and order a free light chain test) in 2 and a half weeks. I really pushed(nicely) and he arranged for an appointment with the department head oncologist next week. Lesson learned you really have to become a patient advocate. Now we are hoping we have caught this early and maybe his other symptoms are just because he has been sick with a chest infection for the past month. Anyways it is comforting to know I can come to this forum for help.
-
Joh Mc
Re: Delay in seeing oncologist
John - Glad to hear that you were able to get an earlier appointment. Let us know what you learn.
-
JimNY
Re: Delay in seeing oncologist
Finally have diagnosis mantle cell lymphoma and not multiple myeloma. He starts treatment next week with newly developed treatment protocol. Like multiple myeloma looks like new treatments are becoming available every year. Thanks for your responses.
-
John Mc
Re: Delay in seeing oncologist
[quote="Joh Mc"]Thanks again for your replies. I took him to another hospital that has a regional cancer centre attached. He was very weak/dizzy and could not stand. After waiting 8 hours in emergency of course all of his bloodwork was good (except measures of kidney function-which we knew prior as he is diabetic). CT scan of his head was normal as was his chest x-ray. Physician was nice but basically was saying we should wait to see his hematologist (who we have no relationship with other than to meet and order a free light chain test) in 2 and a half weeks. I really pushed(nicely) and he arranged for an appointment with the department head oncologist next week. Lesson learned you really have to become a patient advocate. Now we are hoping we have caught this early and maybe his other symptoms are just because he has been sick with a chest infection for the past month. Anyways it is comforting to know I can come to this forum for help.[/quote]
Wasn't the hematologist also an oncologist? Is the oncologist he is seeing also a hematologist. I thought it was very rare to be one without the other. I know my relative is seeing a Hematologist/Oncologist.
Wasn't the hematologist also an oncologist? Is the oncologist he is seeing also a hematologist. I thought it was very rare to be one without the other. I know my relative is seeing a Hematologist/Oncologist.
-
DSMan
Re: Delay in seeing oncologist
Yes both hematologist wew saw were also oncologists. Sorry for the confusion.
-
john mc
11 posts
• Page 1 of 2 • 1, 2