New bad news

[DeniseMarie]

Hello everyone--I had posted here last year after my mom was diagnosed with Stage 111A nslc. I constantly read posts here and am always inspired to keep the faith and to hope for a miracle. Last year i asked if anyone had any positive survival stories and was amazed at how many wonderful responses i received and passed them on to my parents.

Today, however, we got some bad news--my mom, who has recently stopped taking tarceva since it was found to not be working and started cisplatin/gemzar was told that she now has at least 5 mets to her brain. her oncologist told us that he does not want to give us false hope--he thinks that she has 3-8 months--maaaaybee a year.

I'm just so sad--i live in california with my husband and two small children-2 1/2 year old and 5 months. My mom is in NY. I can't believe that she is facing this at 59 and just when she is really starting to enjoy being a grandmother to her 3 young grandchildren (my sister has a year old son nearby my folks) It all started so innocently with a trip to the dr for a persistent "little cough" I talk with my mom several times a day on the phone at least and i cannot imagine her not being here. It is almost too overwhelming at times to think about how her life and our family have changed since her diagnosis last march. I feel so sad for her because she is scared and I feel so helpless and unable to really help her. All of the chemo and surgeries and radiation have taken a toll on her body and her spirit. We are just taking things one day at a time and i constantly remind myself that she IS still here and fighting this horrible disease that came out of nowhere. I plan on heading out with my children to stay with family and be with her for a month or so.

I guess at the end of this unhappy message, what I also wanted to say was that despite her new diagnosis, I AM trying to hope for that miracle that will keep her with us longer and i am still inspired by all of the people--patients and caregivers--who are managing to live with this disease and keep it under control and somehow still have hope.

Thanks to everyone here who posts and shares their stories.

all the best

Denise

[karenl]

Hi Denise

Sorry to hear this latest news about your Mom. I truly think it is wrong of doctors to give people time-frames, unless they specifically demand them. Everyone is different, and he can't possibly know how your Mom will respond to the radiation therapy. I presume he is going by average survival times of people with brain mets, but there are many members here that have outlived that prognosis! I have read that the average survival time following the discovery of bone mets is approximately 6 months - well, Mum had bone mets at diagnosis almost 2 years ago, and she is still here!

I do admire your approach - you are right, we can only take things one day at a time, and be so glad that our loved ones ARE still here.

Take some time to absorb this new information - the discovery of brain mets is a real psychological blow - Mum was found to have several back in January - and then you will find that you get back your fighting spirit, and can feel hopeful again.

All the best,

Karen

[rogfam]

I'm so sorry. I can't imagine how you both must feel, being so far apart from each other.

Your mom is in my prayers. God is good, and there is always HOPE! Keep that faith.

((hugs))

Christy

[Doughnut]

Your post was heartbreaking but I totally endorse everything Karen said. How does her doctor know anything. He doesn't. It's an educated guess and if I had £1 for each of those I'd got wrong ...

I hope I don't come across as flippant it's just that this makes me so mad. My friend's first doctor said all being well she should live 6 months. She was 38 with limited stage SCLC. She got rid of him pronto.

Keep positive, life is never predictable.

Dee

[DeniseMarie]

Thanks guys--I appreciate all the kinds words and thoughts. And yes, i think one of the most difficult things for me is being so far away along wiht just feeling so bad about how she must feel after getting this news--I keep telling her about everyone on this board how they have good and bad days, and that there are people who manage to survive longer than the darn statistics and that she could very well be one of the--no one knows.

Best to all

Denise

[cindi o'h]

Hi Denise.

What you and your Mom are going through is very normal after getting hit with news of advancement of disease. No one likes to hear this as it makes everything spin out of control all over again. This is the roller coaster ride..and it is scary at times...my gosh! But, soon enough, this will sink in and you will both be up for the fight again. I promise you that.

I just hate that you are so far away from your Mom. I am sure that you hate it as well. Glad you are gathering the babies and taking them to spend time with grandma. She will love it and so will you and the kids! I too, hated to be away from my parents when they were ill. Sometimes, I think that it was harder on me than it was for them...can you relate?

I had absolutely no control over what happened to them...And for a control-freak that is a very tough place to be.

I am glad that you posted and that you continue to come here for inspiration. There is an awful lot of that here. We have some real warriors here. Your Mom would fit well in among this group. I am sure that she will do well with her next treatments!

Hang in there, Denise. You will feel a whole lot better when you can see, feel, smell and touch your Mom.

love, cindi o'h

[Sandoster]

Hi, Denise;

I am sorry to hear your news, but do remember that the onc isn't God - only He decides ultimately what will happen. You are in the same situation as my partner's daughter who is also named Denise. She is Mom to Donna's 20 month old granddaughter. She lives 1200 miles away and we don't see her very often. However, she sends us videos of Reese's antics and Donna lives for those and the daily pix Denise sends by email. Denise, her husband, Nick, and Reese are coming to Maine to spend time with us for 2 weeks in July. This keeps Donna going and keeps her fighting - she likes nothing better than being with her granddaughter! I am SO glad that you are going to go be near your Mom. It will be great for her and all of you. Remember to keep the faith, and that miracles happen every day if only we open our eyes to them.

Best wishes and our prayers,

Sandy & Donna

[gail p-m]

Hi Denise

I'm so so sorry to read the sad news on your post. I also totally understand how difficult it is being far away. I live in BC and my Dad lives in NY. I spent a summer there a couple of years ago to help out when my Dad was getting chemo. Yes, my kids are older but my teenager still needed supervision and mothering -- so I was with my Dad but feeling guilty all the time feeling like I should have been with my son... It's a tough cycle. I may be heading back to NY in a few weeks as my Dad seems to be in need of some more chemo again. Anyway, Denise, again I do understand the stress your feeling. Do take your kids and spend time with your Mom. No doubt that will boost her spirits. And as all the others have said, don't listen to these doctors about time frames.

My prayers and thoughts are with you.

Gail p-m

[MilliBr1]

So sorry to hear your news. I will keep your mom and your family in my prayers.

[trishnmiller]

Dear Denise, My husband has recurrent brain tumors (13 so far)from nsclc IV. Every time he pops one out we go back to Gamma Knife. It has literally saved his life after we were given 1-3 months. Most importantly he hasn't had to deal with the side effects of whole brain radiation which I would not allow. We had to fight insurance and oncologists who were non believers but it was worth it to see him the way he is now, whole and working. We know it is not a cure but his quality of life since January has been remarkable. Best to your family and your mom during this difficult time. We used Dr. Wolf at Doctors Hospital in Miami, Fl. He will use Gamma Knife on any number of lesions unlike many other doctors.

Trish

[Maryanne]

Hi Denise,

So sorry for all that your mom and her family is going through. This has so devestating for all of you. You know how we feel about statstics here. They don't exist here as so many have beaten the odds.

I would talk to her doctor about the gamma knife, as there seems to be many people on here who have been very successful with it. If her doctor does not belive in it get another opinion. After all this is her life we are talking about.

My prayers are sent to your mom. I know she will beat those odds by a long shot.

Never give up!! Stay strong. You bringing the grandchildren to her will be the best medicine for her.

We are always here for you.

Maryanne

[berisa]

Denise, I am sorry to hear about the brain mets. But don't give up yet as your mom never receive any brain radiation or other treatments. It's too soon to think the worst. As you said, your mom is still living alive, treasure the time !!

Stay positive!