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My family letter - is my mom dying everyone?

marym29
Posts: 71
Joined: Mar 2006

HI ONLINE FAMILY,

AS I SIT HERE AND BALL UNCONTROLLABLY... DON'T KNOW WHAT TO THINK OR HOW TO FEEL. WE JUST CAME BACK FROM MY MOM'S CLINIC APPT. SO; PLEASE READ BELOW...

I JUST WANTED TO GET ANYONE'S THOUGHTS, OPINIONS, SUPPORT, WHATEVER ON THE NOTE BELOW THAT I JUST GOT DONE WRITING TO MY FAMILY REGARDING MY MOM SO... THANK YOU ALL AGAIN FOR JUST ALWAYS BEING HERE FOR ME! ; )

Dear Family & Dear Friends,

PRAYERS, PRAYERS, AND MORE PRAYERS ARE NEEDED MORE THAN EVER NOW...

Hope you all are healthy, safe, and well today; and had a nice weekend, too! ; )

It's really, really, really hard for me to write this update about mom today; because we definitely got some news (and a lot of news) that we "did not" want to hear...

Before here appt. we were talking about some recent symptoms that mom has been having: some minor cramping and coughing (attributing this to the chemo - we hope!). And I guess this past week Stu was saying good night to mom and she told him that "she thought she was dying". And when I asked mom about her saying this she attributed that comment to her being over tired. So, we were hoping SO MUCH that the news today from her most recent CT scan was going to be even better than the last but...

Her Dr. came in and by the look on his face I just knew. He said that the results from the CT scan were not what he had hoped for meaning this:

- some growth in the tumors in the liver
- the lung tumors stayed the same
- new growth in the lymphnodes in her upper-middle chest area
- new growth on her adrenal gland
- overall.. some of the tumors stayed the same; some are growing again,
and the cancer is spreading (which, I guess, is expected with cancer like this)

Initially, she was in today for her "long" treatment and then (1) more short treatment next Monday. So, Stu asked if she would now be getting these next (2) treatments;and the Dr. said no. They are now going to try a "chemo pill - Xeloda" that she will take twice (3) times a day two weeks on and one week off. She will do this for a month before she has another CT scan to see if the tumors are responding and to check her blood work. The good thing about taking this "chemo pill" is that she doesn't have to go to the clinic nearly as often as she has been and won't need her blood drawn as often since this particular drug isn't supposed to effect her blood counts like the others could have (but didn't because she handled everything so well!).

Then, we will be going to the university hospital in Madison to get a 2nd opinion (which wasn't done initially); and also to see if there are any new drugs or clinical trials she could try (since just in the last 2 years there have been remarkable and new drugs (& clinical trials) out, available, and on the market for colon cancer). Her Dr. and nurse (Judy) today said that there may be something "new" that they haven't heard about yet so...

We asked her Dr. about other possibilities:
- surgery: Dr. said that the "goal" of surgery is to go in and remove "all" of the cancer if possible; and "in a nice way" (I could tell) he said that because she has "multiple" tumors why put her though such tramatic surgery.

- radiation therapy: Dr. said that with radiation therapy it "targets" certain areas and works better if there are only "a few" spots or tumors. Plus, he said that in order to radiate tumors in, on, or around a certain organ you have to radiate "through" that organ; which may effect the healthy part of the organ as well.

- cyberknife therapy: Dr. said that again; this treatment is more ideal for candidates with "fewer" tumors in the body.

Again, because Dr. Hansen is such a wonderful, caring,and dear oncologist I could tell he was "watching his words carefully" around mom as far as talking about the tumors and growth she has in her body.

She did tell her Dr. that she would do whatever she needed to do to get better so...

THANK YOU ALL AGAIN FROM THE BOTTOM OF OUR FAMILIES HEART!

Love Always,
Mary, Davey, Scottie

Limey's picture
Limey
Posts: 447
Joined: Mar 2004

Hi Mary, I am so sorry to read about your Mom's news. I wish it were different. I can't really give you an opinion on your letter as it is such a personal journey for yourself and your family. If you feel this is what you want your friends and family to hear then that is just what you needed to write. I have been on Xeloda for 4 months and so far, my liver mets are gone and my two tumors are shrinking so do not give up hope just yet. I firmy believe that I will never ever shorten my life by believing that I will survie and beat this beast. you have the right to believe the same for your mom. Don't give up hope yet but rather adjust your sails a bit and find a renewed strength and reason to encourage your mom to fight the good fight.
My thoughts are with you and your family.
Limey

hopefulone
Posts: 1048
Joined: Jan 2007

Hi,am sorry the news wasn't better, but please don't lose hope. My husband also has multiple liver mets , is on the xeloda and mets have shown some sign of shrinkage after 2 cycles. (he's having another scan next week). He has multiple mets, but one surgeon we went to told us that rfa , resection , partial resection and rfa combined, etc. were not necessarily ruled out for the future, depending on what the chemo does. So I think it's wise you get a second opinion, and a third if necessary. I know you like your mom's onc, but she really needs to explore all possible options. My husband does have his blood drawn weekly on the xeloda, but his iv treatments are once every 3 weeks and he takes the pill as you mentioned. Good luck and God Bless. Your mom, as all are , will be in my prayers.

Diane

KathiM's picture
KathiM
Posts: 8077
Joined: Aug 2005

Oh, my dear sweet Mary....I am folding my arms around you right now, holding you close. Horrible is the road a caregiver walks....you must accompany us, keep our spirits up, and at the same time hear all of the 'real' news....

How is mom? And her spirits? I would imagine, if you look close, she is handling this better than you are....actually, when they told me about the second cancer, I just looked around and wondered what everyone was so upset about...I KNEW that my path was already laid out for me....

I also realized that I was not done. It came to me from wherever, but I was told in so many words to look beyond, and realized I needed to work as hard as I could, because there would be something for me to do after....

Sadly, dearheart, after all is said and done, life is a process. Some things we can change, some things well, we can't. I have had so many losses recently, I have faith that when it is my time to move on, I will....not before...

I FIRMLY recommend going to a comprehensive cancer center...MD ANDERSON, Cleveland Clinic, even Mayo Clinic is good...make sure that all the answers are given.

Hope is an incredible medicine...protect mom's. Realize, tho, we all have our down moments...I, for instance, can't look at a particular desktop background because it reminds me of an experience I had...who knows if it was NDE or what...

If SHE is so willing to fight, support her...she will know when and if to put down the sword. Love her, tell her that.

Hugs, kathi

jams67's picture
jams67
Posts: 927
Joined: May 2006

I am so sorry that you are hurting right now. Remember when your mom was diagnosed and how you felt. That is now history, and it has been a long road to this point. The road is still going on, and because it is we havee hope for the future.
Be sure and let us know what happens with your mom.
Jo Ann

pink05
Posts: 553
Joined: Mar 2006

Mary,

I am so sorry that you have to go through this. I think that sometimes it is more difficult for caregivers to go through this than it is for the patient. Please don't give up hope. Anything is possible with God. Hopefully, the Xeloda will work better than the treatment your mom is currently on. I think your mom is definitely doing the right thing by getting another opinion. Please let us know what happens. You and your family are in my prayers.

God bless,

-Lee-

deneenb
Posts: 130
Joined: Jun 2004

Mary,

My Dad was diagnosed with stage IV colon cancer, mets to the liver and omentum in 6/04. We have had some ups and downs along the way but he is currently on Xeloda now for 3 months. He got the results of his first scans last Thursday and his tumors are shrinking. Best wishes for your Mom and you and your family.

Deneen

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