New to site, and new to Metastatic Recurrence

Anonymous

New to site, and new to Metastatic Recurrence

Mimi2kleh

Still shocked, and scared. I've been surfing the board here for a week, since Dx, learning what I could before my MO appt this morning, to discuss treatments.

Just finished 5yr Hormonal Therapy in March, as final treatment from original BC. In April, had a CT from unrelated issue, and enlarged nodes were found. Followed up with PET scan and biopsies of Axillary nodes, all results positive. As well as Ax nodes, spread to Mediastinal Nodes, Pretracheal Node, a spot under R Scapula, and on Spleen. MO said they can't do SX to remove nodes near heart, so won't do SX for Axillary nodes either. Said why put me in more pain, have to deal with recovery and possible more side effects and Lymphadema.

I also suffer from PMPS (Post Mastectomy Pain Syndrome) sometimes called PBTS (Post Breast Therapy Syndrome). I don't know how many of you are familiar with that, horrible, chronic pain syndrome. Severe nerve damage and debilitating pain. Also, a year after my first Breast Sx, I had a Thoracic Spinal Laminectomy SX, to remove a benign tumor from my spine, that was crushing my spinal cord. Very extensive SX, cut thru layers of nerves and muscles, causing damage all over, ending in another Chronice Pain Syndrome from my neck, down to lower back. I'm on Morphine 24/7, to try and keep the pain under control. I have lots of breakthrough pain, and periods where nothing helps, and I'm in agony. I'm always fatigued, and can't do many things, and use a cane or walker, or wheel chair for long distances. I didn't have any of these issues, the first time going thru cancer. So now I'm really scared how I'll be able to handle anything with this recurrence. And I live alone. I'm sure there are others of you here, in similar situations, who maybe can offer some help, advice, sympathy, etc.

After discussing the different possibilities of treatments to start with, my MO wants me to start on Xelada this week. I'm supposed to start on Thursday. And after reading about it, I'm afraid of getting Hand/Foot syndrome! I can read about all the possible side effects. But what I'm really wondering about, is how it affects you physically. Like with my previous chemo, I'm know it was bad the first week, with the fourth day being my worst. Do the chemo pills have the same type of effects? Do they put you down and out, fatigue wise and all that, like traditional chemos?

Thanks for listening, and any advice would be greatly appreciated!

~Anne

ElaineTherese

Anne,

It sounds like you've suffered quite a bit since your cancer diagnosis. Fortunately, there are many women who have experienced both PMPS and a recurrence that led to Xeloda.

For a thread on PMPS, see

https://community.breastcancer.org/forum/136/topics/747016?page=52#post_4967436

For a thread on Xeloda, see

https://community.breastcancer.org/forum/8/topics/772113?page=200#idx_5982

Best wishes for successful treatment, and ((Hugs))

Mimi2kleh

Thank you Elaine.

KBeee

I am sorry for all you've been through. That just sucks. Have you visited the stage IV boards? You'll find great advice there

Mimi2kleh

Thanks Karen, I've looked around a little, but since starting the Xeloda, I've been too fatigued to do anything. Will definitely be reading more topics and threads.