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Old 06-06-2007, 05:16 PM   #1
HavahJ
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I can't handle this any more

This not knowing is too much. The marker keeps going up, higher than it's ever been but no other metastasis. Single one in skull was gammaknifed. It's not growing but the marker keeps going up. Has anyone had this experience of marker going up because of gamma. The gamma man doesn't deal in markers but says it's probably because of gammaknifed tumor. Why? What a year after gamma could be making it go up? I've been researching for weeks and can't find out. Dealing with this and M.S. etc. I'm coming unraveled.
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Old 06-06-2007, 05:36 PM   #2
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Which cancer marker are you talking about? Most oncologists do not rely only on markers but use it in conjunction with other indications.


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Old 06-06-2007, 06:44 PM   #3
Mary Anne in TX
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HavahJ, I don't have a clue what having MS is like, but I do know that shingles along with BC is the pitts. I found myself having those same "I can't take it" feelings. I just had to get some pain relief for a while and then get my clear thinking back in gear. I had had a "dolphin moment" about a year ago on a very difficult chemo day and I put myself back in that place in my mind and found my positive me again. I had been looking out the window (we live on a canal on the Texas coast) and saw 5 dophins swimming down the canal. I raced outside (who cares how I looked) and soaked up those incredible breathing noises and the sight of those wonderful beautiful bodies swimming behind my house! I marveled that God had created such remarkable creatures and then celebrated that He let me spend some time with them as they "fished" in my canal. I have a little condo on a beautiful spot in God's kingdom of creatures. It truly took my breath away! I rely on those memories and the wonder they return in me each time I sink into overwhelm. I spent about 6 months or so relying far too much on the CA27-29 tumor marker scores. If they were up, I was down. And vice versa.... But my onc stood firm that they were just another guide to watch for trouble, not hard evidence of trouble. He has never given into my overwhelm or dispair. When I am weak, he stands firm with me. I haven't been in that place too often, but my wonderful onc and my "dolphin moment" sustain me in the worst of times. I can't take any of it away for you, but I do know that within you is a place of peace and wonderment. Find a way back to that place. Ask someone to help you talk yourself there. I admire your obvious courage of fighting one disease and then to take on one more burden with BC. Wishing you a "dolphin moment" of your own. Luv and hugs, ma
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Grateful for each and every day....

Diag. 12/05 at age 60
Stage II, Grade 3, 4.5 cm primary tumor
ER/PR- Her2 +3 strongly positive
Her2 by FISH 7.7 amplified
vascular invasion
Ki67 20% borderline
Jan - March '06 Taxotere/Adriamycin X 3 to try to shrink tumor - it grew
April '06 Rt Modified Radical Mas, 7 of 9 nodes positive
April - Aug. '06 Herceptin/Taxol/Carboplatin X 8 (dose dense)
Sept - Dec. '06 Navelbine/Herceptin x 8 (dose dense)
Radiation & Herceptin Jan. 22 - March 1, 2007
Finished Herceptin Dec. 10 '08! One extra year.
Port removed August, 2012.
8 1/2 years since diagnosis! 5 1/2 Years NED!
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Old 06-07-2007, 04:30 AM   #4
R.B.
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I cannot imagine what you are going through, and I apologise if this seems trite.

I had a look through you post list and did not from the titles see anything diet related. If you have it covered I apologise.

IF you have not thought about it you might like to look at some of the posts on the importance of balancing the omega threes and sixes DHA, and diet generally. The Greek Diet thread, the breast cancer diet etc

There is evidence that omega six may be implicated in brain tumours. In some trials tumours have been noted to be high in omega six. I have recently posted some threads on this.

There is evidence DHA will help with MS

http://www.msrc.co.uk/index.cfm?fuse...how&pageid=714

If you enter "DHA multiple sclerosis" into the search here you will get a lot more on MS and DHA.

http://www.ncbi.nlm.nih.gov/

DHA helps brain function and the world will not look any better but there is evidence DHA/ EPA helps us handle it more pragmatically.

And at a very simple level at least diet is something that you can control.

RB
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Old 06-07-2007, 06:45 AM   #5
Believe51
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Which Markers????

My Husband has had problems with the markers going up, his PSA has risen too and that is a tumor marker for prostate cancer, of course you do not have a prostate and he has Stage IV Inflammatory HER2+Breast Cancer! Some doctors do not even look at markers. My aunt had the treatments you had(I do not know all details of your story) and her markers never went up. Ask your doctor his concern with your numbers and if you do not now, learn to read your bloodwork. My husband has not had your treatments so I do not know if I am even helping you, but I hope you can gather something. I am not sure if where the mets are makes a difference with #'s. You did not specify how you are feeling after your treatment, please let us know. Right now his markers are rising too and it breaks my heart. Something has stopped working and we will be discussing more of our options on tomorrow. Overall, he feels well. In fact, he feels like he may be getting well, even though the markers are up. Please write back with some more details. You will certainly be in our thoughts and prayers>>Waiting For A Miracle>>Believe51...(Marie G)
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Old 06-07-2007, 09:23 AM   #6
HavahJ
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Hi! Sorry that you're in such a mess too. I have a single bone metastasis on a bone in my skull. It was inoperable so it was gammaknifed a year ago. But in the last six months my marker has been going up and is now higher than it's ever been. I had a PET recently, no other mets. I'm wondering if something inside the tumor could be making it go up other than active cancer? It hasn't grown. Thanks Take care, Jan
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Old 06-07-2007, 11:18 AM   #7
Andrea Barnett Budin
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Wink Havah

Read R.B.'s article on DIGESTIVE HEALTH. You have no idea how important your diet and supplements can be! I leared that after '95 dx. I believe these factors have helped save my life. Omegas, co-enz Q10, C, calcium, friendly bacteria, D3, E, Flaxseed Oil, Grapeseed Extract, Lysinemagnesium, zinc, RM-10 Immune Sys Proten-zyme Mushroom Blend. These help in multiple ways for strong immune system, heart, fighting free radicals, anti-cancer, energy -- which all contribute to a sense of well-being, which we all need and want.

MARY ANN's "dolphin" moment is what we all need! I had a YOSEMITE moment, much the same. AWESOME. That, and going within yourself and connecting with that loving, nurturing energy is enormously healing. Do that for yourself. Great to be proactive, informed, involved in creating your own wellness -- but that includes body, mind and Soul. Your Spirit is calling out to you, trying to get your attention.

In Yosemite the roar of the Merced River as you enter on this steep hill, your car's nose in your face is thrilling, and scary, but in a marvelous way. SEEING the river rocks and the water rushing over and around them, in a hurry to get somewhere, had this great energy that invigorated me. My husband and I walked through the Sequoias, some laying on the ground, but still had their Essence alive, I somehow felt. The sight of the giant trees as tall as the Empire State building and wide enough to get several cars through if a tunnel were cut was staggering. Little me, a speck in this vast Universe, stood w/much respect before them. What they have lived through over centuries, the energy they have collected from the time the Indians roamed that space and through World Wars, maybe our Civil War, made my head spin. I touched their trunks, adding my own energy to this incredible creation.

We walked out as far as we were allowed, with a fence to keep you back, with my fear of heights being overcome by the sense of awe I felt so profoundly. My father had died 9 mnths before that experience. I felt as if I'd stepped in a magnificent painting. It was so unreal looking down a mile or more into the green carpeted valley. The river running, the hills and granite cliffs couldn't be real, they were so very beautiful! I had tears (of joy or ecstasy) in my eyes, goose bumps and the thought that I wished my father were alive so I could tell him about this place and tell him to go and see it. I wanted him to experience what I was. The sky was this fabulous blue canopy, and as I stood on this precipe it seemed that I was inside a "snow globe" with the sky above and the valley below. I will never forget that extraordinary moment (in 1978!).

When I need to go within and get back to my spiritual center, as I have a scan (breathing in and holding and out), as I have dental work, or am stuck at a traffic light -- I GO BACK TO YOSEMITE. With the field flowers gently blowing in the wind, kind of waving hello, in shockingly vivid purples and reds and hot pinks... I felt so blessed to be alive way back then, before bc, as I gazed all around me. Life is so wondrously breathtaking!

We pulled off the road. We spotted a baby deer eating crab apples. We got out of the car, not closing the door, not wanting that sound to scare it away. I walked over to the deer slowly, speaking sweetly to it. I reached down and picked up two little apples and held them out in my flattened palm. Talking gently to the deer. He came over to me and ate the apples from my hand. I can still feel the tickle of his mouth. I felt as if I had just touched God! Honored that this big eyed beautiful Creation had trusted me enough to come to my side. My husband snapped a picture of the moment, but it is forever engraved in my heart and Soul.

Wishing you all awesome, dolphin, Yosemite, deer moments to cherish. In fact let us all cherish each day (I know I do along with daily gratitude said aloud). Let us cherish those we love and remember to tell them how very much we love them, even and maybe especially when we feel a bit of anger toward them. In the end, we love them, despite all the unwanted.

Sending healing energy to you all... ANDI (BB)
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'95 post-meno dx Invasive LOBULAR w/9cm tumor! YIKES + 2/21 nodes. Clear mammo 10 mnths earlier. Mastec/tram flap reconst/PORT/8 mnths chemo (4Adria/8CMF). Borderline ER/PR. Tamoxifen 2 yrs. Felt BLESSED. I could walk and talk, feed and bathe myself! I KNEW I would survive...

'98 -- multiple mets to liver. HER2+ 80%. ER/PR- Raging, highly aggressive tumors spreading fast. New PORT. 9 mnths Taxotere Fought fire w/fire! Pronounced in cautious remission 5/99. Taxotere weekly for 6 wks, 2 wks off -- for 9 mnths. TALK ABOUT GRUELING! (I believe they've altered that protocol since those days -- sure hope so!!)
+ good old Vit H wkly for 1st 3 yrs, then triple dosage ev 3 wks for 7 yrs more... The "easy" chemo, right?! Not a walk in the park, but not a freight train coming at 'ya either...

Added Herceptin Nov '98 (6 wks after FDA fast-tracked it for met bc). Stayed w/Vit H till July '08! Now I AM FREE! Humbly and eternally grateful for this life-saving drug! NED since '99 and planning on keeping it that way. To hell w/poor prognosis and nasty stats! STOPPED VIT H JULY '08...! REMAIN STABLE... Eternally grateful...Yes is a world & in this world of yes live (skillfully curled) all worlds ... (e e cummings) EVERY DAY I BEAT MY PREVIOUS RECORD FOR # OF CONSECUTIVE DAYS I'VE STAYED ALIVE. Smile KNOWING you too can be a miracle. Up to me and God now...
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