[Pootren]

Dad newly diagnosed and feeling suddenly 'ill'

by Pootren on Tue Aug 05, 2014 8:10 pm

My dad, who is 69, was just newly diagnosed with multiple myeloma. He has had MRI, CT scans, bloodwork, and biopsy of one of his lesions. He has a bone marrow biopsy coming up to see how 'aggressive' it is.

He just called me and says he feels sick. Coughing up flem, stuffed up head / sinuses, really tired, and has had diarrhea on and off for awhile.

I'm worried as he is writing it off as just something he picked up at the hospital and won't call the oncologist.

Question is when should he be concerned enough to let someone know and who should he call? (GP or oncologist). Should he let someone know right away or can it wait a day or two?

It concerns me that he is still in the midst of all this and we aren't sure how far along he is. He has 4 lesions. One in his skull, 2 in vertebrae, and 1 in scapula.

Any info on infections would be appreciated

[Eric Hofacket]

Re: Dad newly diagnosed and feeling suddenly 'ill'

by Eric Hofacket on Wed Aug 06, 2014 12:59 am

Your father very well may have picked something up at the hospital. If your father has just been diagnosed with myeloma, he needs to understand that his immune system function is not like a normal person’s. People with myeloma often get sick easily and it can be more difficult – sometimes much more difficult – to get over illness and infections. I am not trying to scare you, but probably the leading cause of death in myeloma patients is pneumonia. He should have a discussion with his oncologist about just what state his immune system is at some point in time.

My recommendation is to contact both his oncologist and his GP and find out who can see him first. If he cannot get an appointment soon consider going into urgent care. In my experience with myeloma, there are some complications that can be directly related to myeloma and are serious, such as kidney failure, drug side effects, and the skeletal damage you are already familiar with. My oncologist deals with these problems himself or refers me to the specialist who can.

But, as I mentioned earlier, with a weakened immune system either from myeloma or the drugs to treat it, I get sick much more often and my oncologist is too far away and his appointment calendar is already full dealing with patients with cancer specific problems. So I go to my GP or Urgent Care when I have some kind of infection or when I am not feeling well and do not know why.

The oncologist does not replace the GP just because of cancer. My GP is more readily available to see me and knows how to deal with infections and prescribe any medications to deal with the problems. He can also run labs to evaluate my white blood cell count and evaluate my immune system and, if there is concern that something is seriously not right, call my oncologist for consultation. My GP and several Urgent Care doctor have done this a number of times. As a general rule my oncologist wants to know anytime my temperature gets over 102 F [38.9 C].

Your father is newly diagnosed but with time you and him will learn more about myeloma, its complications, and get a better idea of how to live with the disease and recognize when and where to go to for treatment for complications and problems. In the mean time, I would err on the conservative side and not wait it out.

Before myeloma I did not go to the doctor unless my temperature was really high or 4 or 5 days had passed and I was not getting any better. I have learned I cannot do that anymore. There have been plenty of times when I have gone in and it turned out to be a simple infection of some kind and nothing that serious. But then there are times when it was something serious, such as just after I was diagnosed and was in kidney failure and did not know it.

Let the doctors figure out what is serious or not – they went to med school. And if you or your father find you are seriously concerned that something is not right, consider the Emergency Room if you feel time is of the essence. I never went to the ER before I had myeloma, but did for the first time shortly after diagnosis and again a few months later. Both times I went to the ER I was admitted to the hospital for a week. There was good reason to go.

[Wayne K]

Re: Dad newly diagnosed and feeling suddenly 'ill'

by Wayne K on Wed Aug 06, 2014 8:33 am

While it is unlikely that it is associated with the multiple myeloma, his immune system is compromised and he should contact his doctor. He can't overlook the fact that he isn't able to fight off infections as he has in the past.

[Pootren]

Re: Dad newly diagnosed and feeling suddenly 'ill'

by Pootren on Thu Aug 07, 2014 7:43 pm

Thank you. He was feeling a lot better the next day. I wonder if the stress of it all is getting to him. He fell today and hurt his knee. He was afraid that he may have fractured it. Hopefully it is not, but he already broke his hip last year. This disease has obviously progressed more than we thought.

He had the bone marrow biopsy the other day. That will tell us more.

[Ian]

Re: Dad newly diagnosed and feeling suddenly 'ill'

by Ian on Thu Aug 07, 2014 8:05 pm

Pootren, has your father started treatment for his myeloma already? Or are they waiting to decide on his treatment until all the tests come back?

Also, what sort of doctor is he seeing right now about his myeloma? Is he being seen by someone who specializes in myeloma, or more just a general oncologist or hematologist / oncologist?

[Pootren]

Re: Dad newly diagnosed and feeling suddenly 'ill'

by Pootren on Sat Aug 09, 2014 3:09 pm

He is seeing an oncologist / hematologist. They are starting him on infusions to strengthen bones and they said he will be getting chemo weekly for one year to start. He just had the bone marrow biopsy last week. Infusion is on Tuesday. Results of BMB on Friday.

Seems like they are 'getting things going' pretty quickly, which is good. This oncologist seems quite knowledgeable on multiple myeloma and very proactive. Will look into a 'specialist' but will wait and see what the results show on Friday.

Will keep you posted