[Camby]

My doctor is acting strange

by Camby on Wed Feb 08, 2017 5:09 am

I was diagnosed January 2015. After biopsy I was told I was 75% active cells. They put me on Revlimid and dexamethasone. There was 1 other drug I was on, but I can't remember the name of it.

I had stem cell transplant June 2015 even though I was in remission. My stem cell doctor apologized to me the first visit after my stem cell transplant because after 9 doctors had the meeting about the dosage to give me, they decided to go with the maximum dose, although I weigh 90 pounds. She said they had never given that dose to someone so small, and she was worried it could damage my lungs. This was never discussed with me or my husband.

It has been a rough recovery. I am still not totally recovered yet. My oncologist said when I was stronger I would go on maintenance therapy. She was in the process of placing the order when I got pneumonia and was in the hospital 5 days. At my next visit I was told I would not be getting maintenance therapy. She didn't think I could survive it. She said I had too much damage to my lungs. I also have COPD and see a pulmonary doctor. She said we would just wait until it comes back and then they would treat me unless I was just done.

I saw the pulmonary doctor the next week and asked him about lung damage because I didn't have any before the stem cell transplant. He said I did not have severe lung damage.

She just acts weird now. I saw her again Monday and I asked her about the biopsy because I still haven't had one. She said there was no need to do one. I also have had some issues I discussed with her: increased back pain, stiffness, sores in my mouth, nausea. Same things I had after the stem cell transplant. She blamed the pain and stiffness on arthritis (told me to see my primary care for it) and the sores and nausea on my inhalers.

I don't know what I should do. I have always trusted my oncologist. Now I think she is lying to me. But that wouldn't make any sense. I see her once a month for blood work and Zometa.

Should I say something?

She acts like a totally different person. Almost angry with me.

Any insight would be helpful. I really don't know what I should do. It's hard enough dealing with the myeloma without this on top of it. Thank you.

[Marilyn C]

Re: My doctor is acting strange

by Marilyn C on Wed Feb 08, 2017 1:33 pm

My take on this is that your oncologist feels guilty about the mix-up with the dose before the stem cell transplant. She is trying to distance herself out of guilt. She may also fear a lawsuit, which may be why she is trying to get you off her patient list. This is a heart-rending story, and I feel for you very deeply. I wish you the best as you try to navigate symptoms and doctors.

[Camby]

Re: My doctor is acting strange

by Camby on Wed Feb 08, 2017 5:29 pm

Marilyn,

Thank you for your take on this. I don't honestly know if my oncologist was part of the doctors that had the meeting about the chemo dose. That was the stem cell doctor. I doubt she would have been part of that meeting. I see the stem cell doctor next week; hopefully, she doesn't act any different.

Again, thank you.

[Christa's Mom]

Re: My doctor is acting strange

by Christa's Mom on Thu Feb 09, 2017 3:41 pm

Camby,

I'm so sorry for your troubles. I would suggest that you switch oncologists, and/or get a second opinion from a myeloma specialist if at all possible. You need someone in your court who you can trust!

Lyn

[Brenda Crawford]

Re: My doctor is acting strange

by Brenda Crawford on Thu Feb 16, 2017 1:43 pm

I see a hematologist-oncologist, but if I were in your shoes, I would head for the nearest multiple myeloma specialist as fast as I could go!

[JoeR]

Re: My doctor is acting strange

by JoeR on Thu Feb 16, 2017 7:59 pm

Hi,

It sounds like the doctor may be afraid you will sue her for malpractice.