Husband's Radiation Update

Believe51 · 07-25-2007, 12:29 PM

UPDATE ON HIS WHOLE BRAIN AND PELVIS RADIATION: 12 down & 7 to go!!! Say it with me girls: 'Whole Brain Radiation', sounds worse than it is and his WBR & Pelvis Radiation is going better than we thought it would despite how it sounds. The Radiation Oncologist has spread out his radiation into 15 days, (late start due to a defective disc the hospital sent, waited for new one=4 days behind) to minimize side effects for my Love. The side effects he has experienced are nausea without vomiting, extreme fatigue (plus he cannot turn mind off at night long enough to sleep well), constipation/ loose stools, confusion, increased appetite (thank you Decadron!!) and it takes a while for his memory recall. I think the confusion and memory recall bothers him most because he has always been on top of his game and has a very high IQ.

We need this finished so he can get back onto a chemo treatment sooner than later and cannot do so during radiation. The radiation will end on August 3rd...yippee!! Chemo treatments will consist of Tykerb/Xeloda and he will remain on Tamoxifen. Maybe 4-5 weeks from now he will have the scans done to see where he stands, if needed he will get the gamma knife for those remaining spots. Then my friends, I am hoping, praying and begging (not to proud to beg!!) for the 'Miracle of Tykerb'. I like to think that this new 'Deadly Cocktail' consisting of Tykerb/Xeloda will work the magic we are searching for. And for my peeps who have responded nicely to it, thanks for the updates. We know cancer is unpredictable and everyone's cancer is like a snowflake, anything can happen, yet this combo has gifted so many of my friends here.

Whew..we, what a long week!! I am confident in the decisions we have made thus far and thank you girls for the inspiration you have given to help us to go on another hour, another day, another week. I have not been keeping in touch with you all as much as I normally do and I am sorry for that. Things are settling down finally and I promise to be a better friend (I owe numerous e-mail returns and phone calls and you know who you are!!).

On a lighter note:
Sheila (Ch-Ch-Ch-Chia): Better play pool soon because hubby gained 9 pounds in two weeks!!! LOL!! Yeahhhh!! Getting very worried about the 40 lb weight lose since September 2006=15 lbs lost in 3 weeks. Of course all the weight lost was muscle. And again, I love the new picture, all your best qualities shine through.

Kate: So glad you have got your game play in order and we are routing for you. Great Fighter My Love, you have certainly taught me many things I am using today. Remember this word Lovey: "AURA"!!!!!!!!!!!!!!!!!!!!!

AndiBB: Thanks for the wonderfully inspiring words of wisdom to us, they come into my 'memory recall' often. Cannot tell you how warm & fuzzy you make me feel. How could I ever say thanks???

Chrissy: Thanks for doing the walk for those who are affected with Breast Cancer and for those who will be affected with it. You are so kind and loving, so very giving. People think that you need to have big contributors to fund BC. NOT!!! It is the baby steps we all take to fund for the cure we are so desperate to find!! This year alone I have sold hundreds of dollars of AVON Breast Cancer items and I have a walk (actually 2 walks) in October.

MichelleH: You Are My Shining Star!!!

Lu Ann and all of our WBR girls: Thanks for the updates and information regarding the whole brain radiation thing!! Could have never made it by without you all.

BarbaraH: Thanks for all the kind offers you have made in support of my husband's Breast Cancer. Your posts cheer me so and your disposition on BC is a blessing to us.

Karen: Have not talked to you since you went on vacation. Kiss your daughter and send a hug from us please. Talk soon Love.

Joy: Your sweet personality has been passed on to so many of us here and wherever you go I am sure. So happy your scans were inspiring, for you and for us to see. What hope for everyone!!

Adriana Mangus: Oh Sweetheart, words could never even touch on how I feel about you, you too have changed my entire view on BC.

Ooow, man can I get going with the words!! I know I have left out a few of you girls because this post will not go through. Next posting I shall send my tributes. Please do not feel forgotten for we carry a special part of all of you in us each day. We cannot do this without ALL OF OUR EXTENDED FAMILY HERE!!! You are more family to us than parts of our own families!!

WANNA HEAR MY FIRE....ready?......here goes:

Waiting For A Miracle...and commanding one soon!!!!>>Believe51
__________________
9/7/06 husband dx @ 50yrs=Stage IV Inflammatory HER2+Breast Cancer mets to all bones
10/06 Taxotere=3 week cycles for 10 cycles; Herceptin weekly, Zometa monthly and daily Tamoxifen
4/12/07 stopped Taxotere, continue Herceptin, Zometa and Tamoxifen
5/18/07 Petscan= rapid cell activity appears no mets to organs, many Lytic Lesions(L4,Humeral Head,C2,& Disc Space)...Degenerative Changes, some bone repair progress!!
5/07 something stopped working, new chemo recipe is being discussed(maybe Tykerb/Xeloda)
6/01/07 Pleural Thoracentisis showed Pleural Effusions with no malignant cells!!
6/19/07 & 7/2/07 Second opinions on treatment thus far was good
6/25/07 MRI to skull= many Brain Mets..largest 5 lesions (2=5mm/2=4mm/1=9mm))
7/10/07 WBR & Radiation to pelvis(37.5Gray Units/15 days) & Nutrition Consult
has maintained great bloodwork results almost all along(Procrit & Neulasta rarely used)= Thanks to diet, supplements and all your prayers!! ALWAYS BELIEVE!!

chrisy · 07-25-2007, 06:39 PM

go marie! you CLAIM that miracle, baby!

Mary Jo · 07-25-2007, 06:54 PM

Hi Marie,

Thanks for the update on your husband's WBR. I'm glad it isn't just too hard on him. You are a very caring and wonderful wife. I'm sure your husband is so thankful for all your love and care. There is nothing better than a caring, loving spouse.

God Bless you Marie,

Mary Jo

hutchibk · 07-25-2007, 07:58 PM

Hi Marie - thanks for the update about your hubby's WBR! I am thrilled to hear that it is not as bad as assumed. That is the same thing my onc has told me, but I wasn't ready to go down that road yet. You and your hubby are blazing a trail for many of us Tykerb/Xeloda brain met folks who may still need WBR in our future someday.

Sheila · 07-25-2007, 08:04 PM

Marie
You deserve that miracle...as does your hubby....you bring caregiving to a whole new level.....your husband is one lucky man to have you in his corner...cancer won't stand a chance. Keep on believing....its coming!

rentrac · 07-25-2007, 08:45 PM

A light at the end of the tunnel when the radiation is done - time for a toast! I have special empathy for your husband - I was on alot of decadron because of my brain mets... the munchies drove my weight up 15 pounds in 2 weeks, but I certainly enjoyed every bite! Unfortunately, a predictable side effect of decadron is insomnia. Has your husband asked his docs about something to help him sleep so he doesn't have to lie awake worrying? Another effect it can have is similar to a bipolar patient's hypomania - thinking faster than normal, being unually focused in one's own mind (but not necessarily to anybody else). being very task oriented, feeling that one doesn't need much sleep. It wears off as the decadron is tapered off. But as I'm still learning a month after getting off the stuff, it takes a lot longer to get rid of those pounds. Please know my thoughts and decadron fogged brain are with y'all. I hope he hasn't gotten the acne like rash it can give - I was a bit embarrassed feeling likethe Clearasil Queen of the Silver-hair-set!
Fondly, Rentrac

MichelleH · 07-25-2007, 08:55 PM

Glad hubby is almost done with the WBR! Then the Ty/X will kick some butt on those nasty mets! You keep the faith girl, and keep believing! Remember you & Ed are always in my prayers.
Bless you both,
Love,
Michelle

Beckie · 07-26-2007, 12:56 AM

I'm glad your husband is doing as well as he is during the treatments. Know that the confusion is the Decadron. I was a bit worried, but had a glimpse of clarity tonight ( have cut the dose in half). It seemed a shame to have to take a pill and go back under. I am keeping you both in my prayers.

Beckie

tousled1 · 07-26-2007, 03:18 AM

Marie,

Thank you for keeping us updated on Ed's WBR. He is almost finished -- there is light at the end of the tunnel. I'm glad he seems to be tolerating the treatment pretty well. Soon he will start the T/X and I'm praying that it will be the magic bullet that will give you the miracle you so deserve.
Ed is so fortuante to have such a wonderful caregiver. Having a caregiver like you makes a world of difference. You and in my prayers

Joy · 07-26-2007, 06:58 AM

thank you for the update on Ed. I am also so glad to hear that the treatment is 'O.K' vs really sucky. And I'm excited to see what happens on T/X. Isn't it almost a miracle in itself what our bodies can take and how we can persevere? NOT that we don't ned the real miracle and with your energy I think it is possible. thank you for inspiring such hope and happiness through your posts. And, as was mentioned, celebrate the end of the radiation!

Best to both of you!

lu ann · 07-26-2007, 08:32 AM

Hi Marie,

I just completed WBR and Rads to my limbar spine last week. A Physical Therapist came here on Wed. to start me on therapy. I won't be starting new treatment for another 6 weeks. My onc. feels it would do more harm then good if I start before I'm ready. Hopefully your husbands doc. will do the same.

I'm down to 1/2 dose of decadron daily for 1 week and then 1/2 dose alternate days for 2 weeks then I'm done. Thank You God. I gained 17 lbs of fluid. I am also eating everything not nailed down. My feet were 4 times normal. I'm taking lasix, but then I have to pee all the time. Plus my legs feel like they are 150lb. each.

I continue to pray for you
Love, Lu ann

suzan w · 07-26-2007, 09:42 AM

Hi Marie, what a journey, eh?? You have a great attitude and I just KNOW that the miracles continue to happen for all of us! By the way...decadron made me feel like a speed freak...ugh!!! Have a wonderful day!!!

Emelie · 07-26-2007, 10:35 AM

So glad another leg of the journey is almost done! I have to tell you when I am on Decadron my kids call me "Droid women". It was a big help during our recent move to Colo. though. I don't think I could've done it all without the droid's.
Stay strong and know we are all praying for that miracle.
Emelie

Believe51 · 07-26-2007, 02:09 PM

Thanks so far girls for the comments thus far, just keeping this post alive for more loving from 'ya girls!!!!

Believe51

Believe51 · 07-27-2007, 11:43 AM

Thanks for all the support, he has one more radiation on Monday and four more pelvis rads. Yes to you Lu Ann, this was our worst nightmare too!! I am glad he gained the weight he so much needed to continue this fight. Also pretty confident that the confusion will leave after the Decadron finishes. Thanks to you, I did get him a prescription for Lasix.

Thanks for the support Ladies, we love you all!!

Waiting For A Miracle....and commanding one soon>>Believe51