13 replies to this topic

[beverly]

Anyone for less BMB's?

Message was edited by: Beverly. If there is anyway for CML patient to have less pain I am for it!  Any patient! I have a neighbor age 86 was told he needed a bone marrow biopsy because of a slight blood issue. For one thing he said no! He is so frail it most likely have broken his hip. He is on deaths door yet a Dr. Wanted to make money off him,put him through all that pain. Not all Dr.s are for the patient. If you can't afford a test like that and are told by another Dr. it isn't a must you can say no.  Patients rights. Just saying.    I now have gone off Sprycel as 2 plural infusions in a month is 2 to many for me. I had 1 litter of fluid removed and it came right back. I've told my Dr. I will not get another tap and I'm going of Sprycel.  I did get a rash prior to the fluid problems. Was miss diagnosed with shingles put on shingles medicine. My new Dr. Said its not shingles as I have it again. Pulsating red blotches. Now I am questioning did the shingles medicine help cause the fluid?  I spoke to a lawyer today and was told to report the fired MD for negligence as she was the one who sent me to my first blood Dr. And she never followed up on that. I had to remind her I had CML.  I was afraid to take the shingles drug with Sprycel she dismissed it all. My Dr. Say she should have at least done an X-ray when I saw her late January. I told her I had been to an ER 5 weeks prior x ray bronchitis .. She never followed up with my oncologist ! I am now reporting her to the medical board per a lawyers advice. She sent me to collections over a $58.00 bill I refuse to pay. Not all Drs. Care about patients rights.

[beverly]

I had to get a 2nd opinion due to incompetence in the office of the diagnosing Dr.. The drug company giving me Sprycel free of charge due to no prescription insurance had to call me for the correct numbers to the office. Bristol Meyers lady said she was getting the run around from his office's. I had to give her my Dr.s numbers. So I still have not started my meds over a months since diagnosis..My new Dr said Dr's have differing views on this question of BMB not being needed as the blood test today are so specific they are not needed.

[Trey]

This is not an issue of whether fewer BMBs are acceptable.  At diagnosis a BMB is required for a complete diagnosis, so they are very important at diagnosis in addition to "blood tests" such as FISH or PCR.  A BMB is the only way to know important issues about the marrow to know how to proceed with treatment.  You can read more here:

http://community.lls.org/docs/DOC-1273

[beverly]

Thank you Trey.

[beverly]

Still waiting for Sprycel I just feel so weak bruising like crazy with lumps like cysts ,, platelets at 988 now BASO% 7.91 BASO# 1.54WBC 19.40 NEU# 14.20 MONO#1.00  theses are only the HIGH ones listed. I developed a lump and bruising around it on my forearm Dr. said could be my platelets. Wants to put me on something that will make my legs swell she said. 

[beverly]

Just had dinner with my son and drinking only makes you more depressed .. 241 drinks and couldn't stop crying in the restaurant. My son had to change the subject of my husband his father dying Sept. 17th. Yes I was diagnosed 3 days prior to his death of a long illness.

[Antilogical]

I'm so sorry to hear that, Beverly.  You've had a lot to deal with in a very short period of time.  We're here for you!

[beverly]

Thank you I'm still in mourning I guess that 's normal.

[sharcare]

SO sorry, but did u say 241 drinks?????

[Antilogical]

Maybe 2-for-1?

[ChrisC]

Me, I choose to read it as 2-for-1 drinks — get two for the price of one; however, I haven't frequented a bar in decades!

Dear Beverly, you get to take your time in any ways you wish: no one can do your grieving for you. All the best to you.

ChrisC

[beverly]

  yes was out to have a good time.

[beverly]

I went out to eat with my ignorant GOP Neighbor yesterday. I thought I  was going to have a good time and she was there to cheer me up. No !! Every topic was " When I lost my husband I had to get myself together I had to kids to raise. Do you think you'' be able to go to work part time, "Oh your on disability already would that be a problem? " Well I had 1 piece of pizza and lost my appetite.. I don't think I need to explain why I am on disability she knows I have Chronic depression (Severe) ... She knows I have CML but I reminded her again. I am in mourning still ... I cant deal with the likes of her. Her own daughter has depression. She tells me she can just hear her mother talking to me at lunch and said she was sorry about her mom. Disgusted with non believers in regards to depression. Social security Medicare are for us too even though we are 58  or what ever age we have worked for that money.  I had to take a nerve pill in front of her and the people in the booth across from us probably heard me say stuff about me so embarrassed.

JUs ttook my 1st of many dosae last night it felt like I had the flu,, migtain after 6 hrs of that I took Alieve, no fever vo vomiting but felt like it. Time to take another on . I am taking it at 9 am. It says take tay of night. I'm thinking don't take it at night or you won't be able to sleep with all the side effects I had you don't want to be that sick while trying to sleep. It seemed to be the worst between 1pm and 8pm... 7 hours sick ...

[beverly]

I have decided to stay away from negative people in my life at this point I only need positive people. The rest can live without me.