I'm still in the game

Lyn · 01-13-2006, 12:48 AM

Hi all, I got my punch biopsy report, bearing in mind my ultra sound was clear and my MRI head neck and shoulder were all without disease, and of course my punch biopsy proved it didn't matter, Friday 13th here, I haven't had FISH yet but here goes, Prominent Dermal Lymphatic invasion by carcinoma morphologically consistent with breast cancer, I have been treating this breast since January last year, and my original BC in 1998 went from a small lump in the April to a full blown radical mastectomy in the July, a very agressive fast moving cancer, so I guess the Herceptin must have put the brakes on for this to be lingering and smouldering for so long. The drug trial I was looking at requires a solid tumour to treat so it can be gauged with treatment so I guess I won't fit into that category because on most paper work I am NED but not so for us old timers we know better, anyway I thought I would keep you all posted, and I am human I had a blubber when I got out of the docs office, sheer frustration more than anything, this is my 8th year of treatment I am due for a long long break from this game, but guess not. I will keep you posted.

Love & Hugs Lyn

BonnieT · 01-13-2006, 07:32 AM

Hi
Hang in there and God Bless !!!!!!!!!!!!!!
BonnieT

Kim in CA · 01-13-2006, 09:36 AM

Lyn,

Just wanted to send a big HUG your way. You have been fighting this beast a long time, and you have always been an inspiration to me. I am approaching my 9 yr. anniversary since I was first diagnosed, and I am always wondering what is going to pop up next.

I went to the dentist the other day, hadn't been since 2001. I hate going to the dentist, but that's another story! Anyway, back in 2001 when we learned the cancer had spread to my liver, I needed to have an abcessed tooth pulled before I could start my chemo. I just never put going to the dentist on the top of my priority list since then cause I think that subconciously I thought I would probably expire before my teeth ever gave out! Well, my husband finally talked me into going(because of uncertainty about insurance coverage in the future) and darned if I don't need all kinds of work! I need a root canal and 3 crowns and 2 teeth filled.

Anyway, as my dear Mom likes to say, "If I had known I was going to live this long, I would have taken better care of myself!" I now know we can live a long time, we just have to stay vigilent and keep pushing for what we need.

You are a fighter Lyn and you just keep tackleing these problems head on. You give me encouragement to do the same and I have made a New Years resolution to catch up on all the other non cancerous type check ups I need, because I plan on being here awhile longer myself!

Love Kim

Lolly · 01-13-2006, 11:18 AM

Well Lyn, it's "game on" again; what doesn't kill us makes us stronger as they say, so you are indeed a SUPER-WOMAN!
I wonder if it isn't time to "revisit" some of the chemos that have been successful for you in the past?
Anyway, sending BIG HUGS your way, and lots of positive thinking.

<3 Lolly

Lisa · 01-13-2006, 11:23 AM

Boy, Lyn, can I empathize with you. As you said about NED, we oldtimers know better. When I got my scans back last week and everything was back, I felt like I'd been riding a stationary bike for the past 2.5 years. All that treatment, all those chemos, and it's all back. But I guess, since this all started in 1999, I'd best be grateful that I'm still here. (I had a "blubber", too.)

Pull up your knickers and let's get back in the ring!

Love and light,

Lisa

Lyn · 01-14-2006, 02:33 AM

Thanks gang, I made an executive decision today, that's what I like to call it, and decided that this THING!!!!! is just another chronic illness managed by medication and there is no reason why I can't make plans for the future and carry on as normal. How does that sound? Strange though this morning my blood levels must have been low from the oral chemo, I tried to get up, I even told myself I should get up, but I couldn't summon the energy, then this devil in me said, hang on a minute you are supposed to have cancer and that is what you do, if you don't want to get up you don't, I milked it for all it was worth and kept getting cups of tea in bed finally decided at 1.00 it was time I better better get up and feed my fish, I am trying to get a grip on life and had a nice cold glass of beer this evening, I don't usually drink anything, I figure I have enough toxins in me with out self inflicting, but I have to live and that is what I plan to do, LIVE. My darling older sister has been creating a prothesis for me that will stick into a bra with valcro, not sure if you call it that anywhere else but it is little patches that cling together. I have such a large mastectomy wound it is hard to wear normal prothesis, eventhough they are light weight they are still heavy and especilly with my fractured shoulders. I haven't seen it yet but she is very pleased with the result, she has modified the bra as she had to add extra lace at the cleavage to hide the hollow area on my chest, so I can't wait to see it, it only weight a couple of 100 grams, I have been wearing singlets with dacron pin in forms, but they never stay in the right place and I was never one not to wear a bra so I am looking forward to that as well, my reconstruction is definately on the back burner, I have to wait for stable disease, how do you define stable? Any way guys , here we go again.

Love & Hugs to all.

Lyn · 01-14-2006, 02:47 AM

Hi, I Think I forgot to mention my CA 15-3 tumour marker was 9, it seems with me they must be false negatives, the higher the marker the less disease I have. Thought I would share.

Love & Hugs Lyn

lu ann · 01-14-2006, 04:19 AM

Hi Lyn,

I don't remember your history. Were you origionally dx. with mets? That is a long time to be on continuous treatment. I met a lady who was in her 9th year. She looked and sounded well. You sure keep your humor through all this. I enjoy your wit.

I'm on a 2 month break. I've been on treatment about 18 mos. out of the last 2 years. My scans have been good but my ca15-3 has been slowly increasing from 21 a year ago to 125 Dec. 05. I'm considering asking to go back on taxol and carbo. along with the herc. and zom. It knocked the counts down and I did not have problem with neuropathy.

I sure wish we could all meet someday for a face to face reunion. I know we'll all be there to great each other in heaven. God knows there will be alot of us there. The one good thing about being terminal is you get your spiritual life in order real fast. But it would be nice to get together on this side, don't you think?

I've been asking God alot of questions since Lola died. I just don't understand why she had to suffer so much and die anyway. I'm kind of angry. And why does Linda have to go through brain mets? They always say things happen for a reason but why do they always happen to good people? IT IS NOT FAIR.

Sorry, I had to get that out and I know you of all people understand about things not being fair.

Did you read Lola's journal? I started reading from the last entry then decided to start at the beginning. I could not stop reading till I finished. I know Lola was a blessing to those who knew her. She will be remembered by many. I only wish I could have known her.

Why don't we all make the resolution to have N.E.D. this year. That would be great.

Blessings and Happy New Year to All.
Lu Ann

kristen · 01-14-2006, 08:48 AM

Dear Lyn,

the living legend, the living is the key word here. You are such an inspiration to us all, the way you get punched down and get right back up and start the fight all over again. I hate having to see you go through so much. I hope that this is the year you get a reprieve.(sp.) no one deserves it more then you. lol

Nicola · 01-14-2006, 09:55 AM

Hi Lyn,

This is just another bump in the road. Hang in there and know that we are all sending good thoughts, prayers, hugs and lots of love your way. You are an inspiration to us all.

Love,
Nicola

Lyn · 01-14-2006, 08:00 PM

Thanks Gangm hi Lu ann, no I have been in constant treatment, my first and longest NED lasted about 4 months and this has been the routine ever since. The one now, well just before Xmas the year before I got the NED so that made it a nice Xmas and New Year, that only lasted 2 weeks into the new year and it hasn't budged, I don't believe it has got any worse either, I had pretty radical rads with Xeloda and those burns put me in hospital and after about 26 treatments with no result I went on the Xeloda with Cyclosphosmide and Herceptin and I have been on it since early September, so I haven't really given it much chance but I needed to know my situation for the Trial drug, turns out he has gone on holiday for a week so I am still none the wiser. I will keep you posted.

Love & Hugs Lyn