Advice please-possible bone marrow mets
 

I would really appreciate any advice as am feeling very down and frightened AGAIN. I have been on 3 weekly herceptin alone since August 2009 after completion of 6 rounds of taxotere and herceptin for mets in the contra lateral lymph nodes. Initially my platelets, white cell and red cell count was low but gradually showed an upward trend. Before Christmas my platelets dropped and are now around 110-120. My haemoglobin and white cell count continue to improve which feels very odd.
My onc has now scheduled me for a bone marrow aspirate next week as he thinks I have mets in my bone marrow.
Has anyone had this happen to them??
If mets are confirmed he is planning to give me xeloda and herceptin or xeloda and tykerb if they are still her 2 positive.
I have also just started to get very sore eyes and wondered if this was connected to anything?
Thanks
Ellie

Re: Advice please-possible bone marrow mets
 

Hi Ellie -
Did you post someplace that you were having a bone or CT scan?? Is that where the info for the aspirate is coming from?

Are you having any pain? Just wondered what has led up to this screening.

You know we will all hope and pray for the best outcome and your fears to be put down.

Re: Advice please-possible bone marrow mets
 

Hi Steph
Thanks for replying,i'm having a bit of a melt down day today.The only reason I am having an aspirate is due to my platelets staying around 110 and not picking up. I have no bone pain.My onc thinks that cancer cells in my bone marrow may be destroying the platelets. I asked why they only destroyed them and not my white or red cells which are picking up nicely. he said that platelets are more vulnerable.
Ellie

Re: Advice please-possible bone marrow mets
 

Ellie,

Thinking of you. Hope you find out something soon.

Amelia

Re: Advice please-possible bone marrow mets
 

Ellie, I had sore eyes right through chemo and herceptin also.
I don't have advice but wanted to send good wishes for benign results:)

Re: Advice please-possible bone marrow mets
 

Ellie,

I'm praying for a good test result.

Re: Advice please-possible bone marrow mets
 

Ellie, I am thinking about you and shall also be praying that you have good news after your bone test.

Barb A.

Re: Advice please-possible bone marrow mets
 

Ellie,
I am so sorry to hear that you must bear the burden of more tests.

Take heart.....I doubt that the sore eyes are a major concern. After multiple years on Herceptin, I continue to get the red eyes, drippy nose syndrome.

I don't have first hand experience with bone mets that I can share. Please keep us posted. I am certain you will post with an all clear!!!

Lots of Love....Lori

Re: Advice please-possible bone marrow mets
 

Ellie,

Adding my prayers and good wishes for clean results for the bone test!

hugs,
shobha

Re: Advice please-possible bone marrow mets
 

I have my fingers crossed for you.

Re: Advice please-possible bone marrow mets
 

Oh, Ellie, this just sucks! Seriously! I will pray there is another explanation for the anemic platelets. Be careful with Fish oil and vit E as you do not want to get a bleed going. Any nosebleeds? I found a good b-complex helpful with my slow to recover platelets post chemo.

When is your aspiration scheduled? We want to cover you with prayer that day. Come to think of it, my counts did not fully rebound until after I completed Herceptin.

You hang in there, Ellie Girl!

Re: Advice please-possible bone marrow mets
 

Ellie,

Praying that the results are B9.

Tonya

Re: Advice please-possible bone marrow mets
 

Thank you for your replies. I am due to have the procedure on Tuesday at 2pm so prayers from my sisters would be gratefully received.

Laurel- have not had any nosebleeds but will take your advice on a good B complex as hadn't realised that this may have affected my platelets.

Also just found out that due to a mistake I have been having a much higher dose of herceptin than recommended for my body weight!! Don't mind if it sorts out the cancer cells but hope it hasn't messed my blood up.
Love Ellie

Re: Advice please-possible bone marrow mets
 

Hi Ellie,

Indeed, this sucks! But perhaps your onc is of the testing, testing, testing kind? Some oncs see risks everywhere, and some give your body a bit more time to sort itself out. I think that perhaps the high Herceptin dose could explain some of your symptoms. Or perhaps you are just a slow platelet builder.

I hope you get results asap and I bet they are good: no cancer.

Love

Jacqueline

Re: Advice please-possible bone marrow mets
 

Hi Ellie, Of course since we have to deal with this darned disease we always think the worse. That's where the mind goes imediately & with good reason! But there are many reasons for low platelets as I'm sure you know. I wish I had an answer for you but I don't. I just hate that you have to go thur all this. But I will be praying there is some benign reason for your low platelets.

How much higher dose of Herceptin were you getting? I wish I could be of more help. But please know I will be keeping you in my thoughts and prayers. Hang in there...I know how stressful these things can be.

Chelee

Re: Advice please-possible bone marrow mets
 

Hi Ellie, Just wanted to let you know, I am praying for good news!

Re: Advice please-possible bone marrow mets
 

Ellie,
Of course will be saying those prayers for you.
Best Wishes,
Jean

Re: Advice please-possible bone marrow mets
 

Unfortunately I cannot comment but I am sending a lot of love and be well wishes and I hope for the best.

Re: Advice please-possible bone marrow mets
 

Hi Ellie
I will be saying a prayer for you tomorrow to our new Aussie saint Sister Mary McKillop. The church over the road from us has a stained glass window dedicated to her and she worked in this area.

You know I have done a lot of worrying over the past 9 years and I know how hard it is to wait for those tests. Try and put it out of your mind and keep busy.
I also found it helpful to think "OK what is the worst thing that could happen?" Eg: if scan shows something then there will be a treatment that can help".
Anyway I am much better at not worrying now than I was before.

Take care and know we are thinking of you "down under".

Jackie
Hamilton, Australia

Re: Advice please-possible bone marrow mets
 

Hoping for the best....Let us know.