My Birthday Message

[Christine]

Just wanted to share with you all my thoughts on my 7th birthday after being diagnosed with stage 4 and brain metastases. I was diagnosed in 1990 with stage 1 and supposedly had no nodes with a great prognosis. I was told in 1990, that the tumor was 1.5 cm and was a grade 3-4, high enough to get my attention to be vigilant about my self exams. It took 9 years for me to find the relapse, under my left collarbone. The previous 3 months. I had 3 bouts with vertigo and had never heard of getting brain tumors from breast cancer. This was a new phenomenon I had to deal with. In early spring ’99 I tried to surf the web for help, hearing only the voice of doom…I was interested in finding more current info on line and researched further about new therapies for Stage 4 BC.


The voice persisted with no help in sight especially since I had 3 brain tumors making my survival look very grim…. I was feeling much better, when I finally fell on a search engine with more current up-to-date info on a new chemotherapy that was FDA approved 6 months before my DX; and that was Herceptin. I needed to be tested for the HER2neu gene. After the biopsy was done, the surgeon did not know of this type of test so I asked for the HER2neu test soon after. Voila!! It was 3+++. I felt a sigh of relief even though I really didn’t know much about Herceptin yet…



Soon after I was very tired, losing weight, and coughing. I began thinking of moving from NJ to CA, San Diego. My only brother and family living in San Diego, and I felt my 2 daughters needed more family. My husband and I made a quick decision to go west, sell our home and fly to an oncologist in San Diego who came recommended by BC patients who already knew about Herceptin, since all the research had been done in Los Angeles. It really did take a long time for Herceptin to spread awareness throughout the country. Many patients and oncologists were not too eager to try a new chemo on such sick women. The California and east coast oncs seemed more knowledgeable in 1999-2000. My new onc was very concerned about my brain tumors and wanted me to have a Radiation Oncologist as well. I started A/C first. It was totally ineffective and my condition continued to progress with more fluid in my lungs. I was drowning in my own fluid and not able breath and started to speak with a gritty voice. I went to my onc and refused my 4th cycle of A/C, and wanted Herceptin instead, hoping this new chemo would help my present condition. I was dealing with virtually 2 problem areas. The next day I was given an infusion of Herceptin /Taxol along with Decadron and Benedryl as premeds. After 3 days I felt remarkably better, and felt a dramatic evaporating sensation of fluid in my left lung. It was miraculous and unbelievable. Prior to this great event I was prepared for a brain tx called Gamma-Knife stereotactic radiation therapy. I was given Procrit and Decadron That was all new to me, but a very tolerable one-day procedure It went well, except after 6 months, of surveillance, MRI scan showed 6 tiny mets had appeared as new tumors in other parts of my brain. I realized exactly what I needed next to save my life. My brain was a nest for tiny mini mets hidden from scans until more than 2mm’s in size. How long would it be before more showed up in more dangerous locations. Whole brain radiation was my next option. I figured this was my only option. I read about the doses, the # of days, and relevance to minimal brain damaging side effects. It turns out the longer the daily doses, the smaller the daily doses. I wanted to have the longest effective treatment with lower rads. I was given 20 days of 2 grey/ day for 20 days, totaling 40 grey. Brain radiation is very fatiguing for a few months, but read more about how to survive such an energy consuming form of fatigue. The only way is to keep nourishing your body and hydrate with nourishing fluids with electrolytes, such as sports drinks. It was a few months later that all looked up for me, until one tumor that measured 2 cm prior to brain radiation that was shrinking, started to grow a few mm’s over 2 months. My radiation onc wanted to have it removed by my Neurosurgeon. I needed a second opinion, and went to a very notable brain surgeon in L.A. This physician had the last word. He felt I needed to be patient and continue scanning, which made sense to me since I had the treatment. The new radiation Oncologist I sought agreed. He felt the tumor was not growing like a cancer, and will eventually be going stable and in remission over a few more MRI scans. I was also told that the radiation is still working over 9 months. The longer the daily doses the longer the radiation works. Well…it sure did work. All my brain metastases and node and lung involvement with cancer has all been resolved since Nov.2000. I continued to have MRI’S every 6 months, and had body Cat-Scans, completely negative with markers totally normal. My real birthday wish is for all of you to find your way to survival and NED for all. This was a great opportunity for me to get my real message across the web. God bless you with wellness and strength.

Hugs, Christine

[RhondaH]

And MANY more! Curious though, did you have chemo and or radiation after your diagnosis in 1990? Take care and God bless.

Rhonda

[Cathya]

Christine;

Thank you for such a wonderful, inspirational message. Brain mets are my big fear but your story offers me great hope that should they occur one can survive them! Message received by a grateful member. It is hard to believe that so recently ago herceptin was not freely offered and her2 status not standardly tested. Happy Birthday.

Best regards,

Cathy

[Lolly]

Christine, your story inspires me over and over again, YOU ARE MY HERO!

Rhonda, if you go to the Home page and click on Community, then go to Members Stories, you'll find Christine's story "Brain Talk". A good read!

<3 Lolly

[tammymarie1971]

Christine...Happy birthday!! ANd thankyou for sharing so much of yourself with us...I am truly grateful for the inspiring story you give... it is such a blessing for us all!
Tammy

[TriciaK]

Thank you for your story, Christine. I had not heard all of it before. You are truly an inspiration to all of us. It is incredible that inspite of all you went through you still started this wonderful website for all of us! It has been a lifesaver--literally---for me, and I know for many others. God bless you and Joe! Hugs, Tricia

[Christine]

Rhonda
I did have radiation and Chemotherapy in 1990. The tumor size was 1.5 cm with no node invovlvment as far as the pathologist reported. It was small enough to perform a lumpectomy and have radiation to the affected breast. tHE biopsy reorted the tumor to be Kigh Grade Lhad 6 months of CMF - cytoxan,Methotrexate and 5-FU. herceptin was unheard of at the time.Tumor marker CEA was the only marker that worked for me. I so feel if Herceptin was given in 1990, I could have avoided a Stage 4 DX. The Adjuvant chemo I took sure didn't help. In those years the Oncologists wanted the BC patients to feel better by telling them that after the 5 year mark you will be safe. That was a unknown that proved to be wrong. Many do relapse even w/o nodes! As years go by markers become a tool for you and the Onc to check any progression. There is a new blood test that the Onc can add to the others called theHER2serum test. If you haven't hratd of it, ask your Onc to use it as a monitor. Cood Info. Hugs Christine

[chrisy]

Thank you, thank you, thank you. Your message is a real gift from God. A gift of hope and courage.

Chris

[Christine MH-UK]

Great birthday. My sister has the same birthday and, did you know, that it used to be the British queen mother's official birthday?

I hope that you have an excellent birthday today and for many more years to come.

All of the work that you and Joe have put into fighting her2 positive breast cancer has allowed alot more women to see even more birthdays. I used to not celebrate birthdays, but now I sure do.

[kat in the delta]

HAPPY Birthday, C. You are A Miracle & hero to all of us !!


Is the her2serum test the same as the Bayer serum test ?? I have just finished my 1 yr of hercept. and was slightly ER+, so will start Arimidex/Femara when I go to see my Onc. MON.--I will also ask him for this test, too. He is the only Onc. for all types of cancer in this town. Let me know, kat

[RhondaH]

My dx was almost EXACTLY like yours only my tumor was 1.6 cm. Being that I was stage 1, no nodes would my onc USE HER2serum test on me? Thank you.

Rhonda

[Johanna Johannsdottir]

Thank you Christine and Joe and your lovely daughters,


Your story is a great inspiration to me and others. Wish you and your family a many Happy Birthdays.

Best regards

Jóhanna

[Chelee]

Christine, As you know I am the one stressed over my delayed rads due to my missing ribs. You were NICE enough to answer me which I just read and want to respond too after this. Due to this stress...I am in a bad place in my head right now...thinking all kinds of things which is NOT good for me...this I know. I was so up-beat and feeling positive until this problem came up.

So when I read your story it brightened up my day like you would not believe. I did not know your entire story. Its amazing to say the least! You are a real go getter and fighter. Now I fully understand why this board is here. When I was first DX with her2, 3+++ I was TERRIFIED. Like you...got online and started searching. The short of it is...I was THRILLED when I found THIS website. I thought I struck gold! All her2 women...I could get answers, help, support, knowledge about this *type* of cancer. And I have gotten that and so much more! Thank God for you and Joe.

You really did your homework through your journey and found some great doctors. Your one strong women. I was crying by the end of your story. (A good cry.) It just gives so much hope which I need right now. I thought I was doing ok today till I read this. I'm a bit more emotional today then I thought. But with my doctors leaving me hung out to dry...so it seems...I am just scared right now.

But THANK YOU from the bottom of my heart for posting your story. I really appreciate it. Gives me so much more hope because right now I am just having a really hard time.

If not for this board...we wouldn't even get to read your story. Thanks for this board, and for helping so MANY of us women. May all your scans continue to come back clean, and wishing you well for MANY, MANY, MORE YEARS TO COME.

May God bless you!

Sending you a big hug!

Chelee

[Vicki]

It was great talking with you today, Christine, and I'm so happy you have your family together to celebrate your birthday. I'm sure everyone on the site appreciates hearing your story, because you've been through a lot and have come through it all with flying colors and a dedication to helping others and it motivates each and every one of us. Enjoy that tofu cheesecake.

XO,

Vicki

[KathyH]

Hi Christine!

I am new to this group but I feel so blessed to have found you. You and all these women have inspired me and made me feel much less alone. I knew no one else with a stage 3c diagnosis until I read the posts of the other stage 3c's on this website. I would love to meet you and these other beautiful women in person. Has there ever been a HER2 meeting of any kind? I would go wherever it took to be in the same room with you all. Congratulations and thank you.

Kathy H

[Sheila]

Christine and Joe
Happy Birthday Christine...and many, many more...you are such an inspiration to all of us...without you and Joe, I would not have the positive outlook on life I have...you have given us all the ultimate gift...yourselves, your inspiration and your courage, and for that I will be forever grateful.

[Christine]

Kat

Bayer is the lab that formulated the her2 serum test. Quest and Lab Corp do use it. It is a great tool to monitor the progression og her2 cancer cells at an early time. I use it , even though my test still is normal. It's easy way to add an extra marke,, Hugs

[Christine]

Rhonda
MY answe is he should. It really gives the onc an extra tool to determine during chem after 2-mos if the chemo is working, and/or heh to determine progression during or after treatments to catch things early
Iam NED, feel this test can help us after we are in remission for a long time to forever. We all need to take any precausions. I approved this serum test as credible monitor for my own use.

[Christine]

Kathy
Now that you found us , we would like to share your concerns, and answer ???'s. Many of us can fit into your shoes, just try us on for size. We aim to educate help you thru your path to survival
Hope you are chechung out the manyinformational pages we have on this site.

Keep the faith...
Hugs Christine

[Bev]

Happy Bday Christine, thanks for all you an Joe do. BB