Cancer growing again

[Guest kathleen]

Long time since I've been here again. My Mom was listed as "clinically stable" in April. Now today after the lastest CT scan the cancer shows to be growing again but very slowly. It has grown from 2.5 centimeters to 2.7 since December. Which is small. But what does this mean? The oncologist says that since the cancer started to grow again after the first line of treatment (Taxotere) that they won't use that again. Any other chemo's will be 20% or less effective. We have decided to wait until the cancer causes more problems before doing anymore chemo, if at all. Mom is 85 now and chemo did shrink her cancer before but she got very sick at the end of her treatment. What I do know is she is not ready herself to give up. She still very much wants to live life! And as a grown up kid, I don't ever want to let her go!!!!!!

I don't know what I'm writing for as far as response. I guess I don't know what to feel. I asked the Oncologist straight out - IF WE DO NOTHING - NO MORE CHEMO - HOW LONG? He said he couldn't answer that as the cancer is growing so slowly and everyone is different. Could be a few months or a few years. I guess this didn't sound the worst....but it is hard to take it all in. Like being in limbo land. So very glad it is growing slowly, so very sad its there at all, so helpless. I'm trying to think positive but in reality it just stinks that this beast exists and everyone here has to deal with it!!!

Any words of wisdom you can share would be comforting. I'm sorry if my message doesn't make sense but its nice to have a place to ramble. Wishing you all the best.

Kathleen

[dihen]

Kathleen, there is never an easy answer, but I think based on what you have shared that it does make sense to wait it out for a bit before making any decision about the chemo treatment.

I'm sorry that your mom and family have to deal with this horrible beast and I wish you the best as you move forward. My mom was just told that her first post-surgery Pet Scan shows NED, which makes me happy, but at the same time I remain guarded about this news, as I know this is a beast that likes to strike again:-( So for now, I try to just treasure the day by day with my mom.

All the best to you and your mom!

[Littlegirl]

Kathleen - Ramble on...you make sense to me. It's hard to be in limbo and not know what to do or even what to think! I'm glad your mom's doctor admits that nobody really knows how long your mom has, it IS the truth. My mom is 78 and though she seemed to be tolerating her treatments better than we expected she is done now with the radiation and is not bouncing back as quickly as we had expected. Her doctor did plan on doing at least 4 more chemo transfusions but mom is tired of just not feeling well and I don't think she will have any more treatments. My mom also has the slow growing type (non-small cell, squamous) and the doctor has said that possibly it has been growing for the past 7-10 years (without causing much of a problem). The optimisitic side of me wants to say "We've torched this tumor a bit, and possible its been around for 7-10 years already...maybe mom can have several more good years ahead of her even without anymore treatments." The not-so-optimistic side of me spends too much time on this site and fears the worst. I would not say that my mom is ready to give up, just ready to enjoy the rest of her time here without feeling ill. I'm hoping that is what she gets.

I'm hoping you still have planty of quality time left with your mom too. Make the most of it!

Karen

[Treebywater]

You make plenty of sense. Limbo land is a difficult place to be. I'm sorry to hear that it's growing again, but I will pray that it will continue to grow very slowly... or not at all... And I will pray for strength and wisdom for all of you.

Your Mom is lucky to have you in her corner--helping her and supporting her just where she is and in whatever she decides.

[Don Wood]

Actually, your mom's age gives her an advantage with cancer. Cancer seems to grow more slowly the older we are. I think a wait-and-see may be appropriate here. Don

[kamataca]

So sorry you had such news!

Slow-growing is a very good thing. It gives your mom time to make some decisions. She may decide that going through the rigors of chemo just isn't worth it. She may decide to fight like a banshee. Whatever she decides, she needs to know that you support her.

Keep us updated. I'll pray for you guys.

Kelly

[slinaresholz]

Hoping your Mom will feel better with no treatments for a while. My Mother couldn't take it after a while. She had cancer of the gall bladder that spread to the liver. She was terribly ill from the chemo. Praying that your Mom will soon feel better.

Sharon

[gail p-m]

Hi

Yes "limbo-land" is not a fun place to be. However, if it is slow growing, sometimes "watch and wait" makes sense. I have an 82 year old Dad who has been battling this beast for 5 1/2 years now. He can't tolerate very much more chemo so up until recently when he is beginning to feel worse, watch and wait has been the course of action that we've taken and he has had a reasonably good quality of life.

Prayers for your mom.

gail p-m

[kreed70]

Kathleen~

I'm sorry to hear that the cancer is growing again. Thank God it is slow! I don't have any advice for as far as treatement plan. It is such a crazy disease who knows what will work. Prayers for you and your family.

Kelly

[Ann]

Sorry you are once again dealing with this feeling of not knowing what to do. From what I have learned, Don is correct that cancer seems to grow much slower in older people. Apparently, this is true in your mom's case. Since her cancer is slow growing, you have time to make important and wise decisions. My thoughts and prayers will be with you and your mom.

[Kasey]

Kathleen,

I do believe your doctor gave you HOPE when he said he could not give you a time frame for your Mother. I do believe there is reason that you can HOPE for MUCH more time............given the slow rate of growth. Live your lives to the fullest and know that some folks (older as your Mom is) actually die many years later of something totally unrelated to cancer. So that's going to be my personal HOPE for you both.

BTW, my actual 'given' name is Kathleen though I never go by that. So you are very special to me, Kathleen!

Kasey

[trish2418]

Praying for you and your mom.

Trish

[Carleen]

I'm sorry Kathleen to hear that the cancer is growing again. But I thank God it is slow growing.

I will say prayers that you mom has many many more years of quality life before the cancer causes any problems.

I know that neither of you are ready to let go, but chemo made her so ill. Have you considered doing any of the targeted therapies that are less toxic. I know that many people have said that things like Tarceva or Avastin are easier to tolerate. I also don't quite understand why the oncologist told you any other chemos would be only 20% effective. I was always told that when doing chemo, they try the one that is standard no the most effective but that it was all a matter of finding the "right one" that works for you particular cancer cells. For my husband the most effective chemo was his third line chemo.

Anyway that is besides the point. I hope mom is doing well, and you both get to enjoy many many happy days and years together.

God Bless

[ztweb]

I am so sorry. Please know there are people out there praying for you!

[marym]

So sorry that there is growth again. The wait and see might make a lot of sense particularly if the symptoms are negligible. If she feels well without chemo, waiting seems a good route. Also, if she does opt for chemo, see ehat is available that might be less difficult for her. I am on Alimta right now and there is almost no side effect for me. (Do know efficacy yet).

Best wishes.

Mary

[Don M]

Hi Katleen: wait and see seems like the best thing to do. It is still a plan. I would think that it could be called stable actually. 2 mm change since December is not much. I hope you and your mom can enjoy each other and not let the limbo thing get to you.

Don M

[Guest kathleen]

Hi to Everyone! Let me just say you are an amazing group of people. You don't even know me and you have helped so very much.

Yesterday was a terrible day! I stayed with my folks the night before and just before I was leaving for work my Mom had an episode. Much like a seizure or stroke. We are not yet sure what it was. She was taken by 911 to the hospital and they did a CT of her brain. Within an hour and a half she was back to herself again. ( I thank God very much that there was no peranent damage!!!!) Very scary seeing her not be able to speak but yet, I knew she completely understood what was happening. There was a brain hemorage. This morning they are doing an MRI to see what exactly is going on. They said it could be a mini stroke, but it didn't look exactly like that and they want to make sure the cancer has not spread to her brain.

What I want to know is, our oncologist who is supposed to be the best in Madison, WI told us that with NSCLC it is not as common for it to spread to the brain and that they would not do a brain scan unless there were symptoms (I had called about this at least 2 months ago). So now we are fearful that it HAS spread to the brain. Why have we not checked for this sooner? It is so heartbreaking! Which I'm sure ALL of you have gone through!!! They said physically she is VERY strong. So today we will find out what is going on in her noggin and I may need a good stiff drink tonight!!!

Thanks to all of you for your support and I am praying for you and your families every night.

PS. KASEY!! I go by Kate usually. Only Mom, Dad and my fiance call me Kathleen!!!! I did feel hopeful when the doctor gave us such a wide time frame, its such an up and down experience, now to find out what is going on in her brain! My nerves are shot!

PSS. Don W. Thank you for sharing that the cancer grows more slowly in older adults. I can't expect her to live forever, but I've always told she and Dad "well you can try!!!!"

PSS. So hard to NOT be guarded even when there is good news. I think it is natural to feel that way. Also so hard to be comepletely optimistic with this beast! We all just take it day by day I guess. Thanks again for letting me ramble with such understanding and I will let you know what today has in store for us.

k

[Don M]

Katheeen: your mom is having an mri now and that is good. I am concerned that the oncologist told you

"that with NSCLC it is not as common for it to spread to the brain and that they would not do a brain scan unless there were symptoms" .

My understanding is that it is very common to have mets to the brain. In the past, oncologists would typcially wait for symptoms before an mri, beacause by that time the disease was reaching its final stages and there was not much more treatment to be done. The intent would be to treat brain mets palliatively. More recently, oncologists look early on for brain mets, in the absence of symptoms so that the mets can be held in check. They see that there is longer survival happening with lc patients due to new drugs and they see that the mets can be handled long term by using gamma knife or cyberknife for the mets. They try to catch them when they are small and can be managed more effectively.

Last February, a new tumor was discovered in my remaining lung. I had no symptoms of brain mets, but my oncologist said I should get an mri anyway. I immediately agreed. The mri came out clear for me.

I hope the mri shows your mom has no mets.

Don M

[Guest kathleen]

So the MRI showed there were brain mets. 3 lesions on her brain. The largest is 1cm. The other two very small. Mom had her first radiation treatment today.

YES. I would too think that we would have been looking to this prior to it happening! Someone suggested to me that with HMO insurance they will not do certain tests unless there are symptoms. Gee that is great.

I am P.O'd right now!!!!! They seem to think the radiation will help. Tell me, is this it? Is the fight over? I have not looked up much on when the cancer spreads to the brain. Did they not look for brain mets prior to this because she is an old woman of 85????? She is physically about 70!!!!!!!!! I am angry and I want to punch someone right now.

A very long day. Please shed some light.

Kathleen

[RandyW]

Click On the following Link for Info;

1) http://www.lungcanceronline.org/treatme ... stherapies

2)http://www.oncolink.com/conferences/article.cfm?c=3&s=12&ss=64&id=428

3)http://www.cancernet.com/immunotherapy/r_brm.html

I do not have any personal Experience but I know you will hear from some who have dealt with this. Debs Cancer was everywhere except in the brain I was informed. These are all credible links for Info on the subject you ar einvestigating. I hope I helped you some Thanks and saying prayers. Get some rest and vent whenever you need to. We will always listen no matter what. You should have read some of mine! Sending Prayers and Positive vibes for some good news.

[Don M]

Kathleen

The mets are small. She should respond to cyberknife. Try the following link and talk to the oncs who answer questions on the board. It may be helpful to get a cd of the mri and post the images on the board for the oncs to look at.

http://www.cyberknifesupport.org/forum/default.aspx?c=4

They will be able to get rid of the mets entirely without damaging any adjacent healthy brain tissue.

What kind of radiation is your mom having? Whole brain radiation? Gamma knife? I would avoid whole brain radiation. Some may argue that WBR will kill mets too small to be seen for cyberknife to kill, but I think one could just wait until they get big enough to see and just keep on zapping them. In terms of side effects, some pople have had wbr and do just fine. Others have problems within months. And no one knows yet what the effects would be years down the road, because people don't usually live that long after wbr just 5 years ago. These days, survival time is longer and the long term effects of wbr may be a real concern.

Gamma knife is similar to cyberknife except the head does not have to be immobilized in cyberknife.

I would push for killing the mets by targeted radiation. I think that one can manage the brain mets indefinitely whenever they may pop up using cyberknife.

If I got brain mets, the fight would definitely not be over. I would just get them zapped as they arose and keep on going.

Don M

[Guest kathleen]

Randy and Don,

Thank you for your help. they are using targeted radiation and then said that six weeks after radiation is completed they will look again and can do some kind of surgery on what is left if anything....I don't know if it is cyberknife or gamma, but thank you for mentioning and I will find out.

Her oncologist sounded rather positive about the radiation helping....much more positive than he ever sounded about chemo working. Mom doesn't have as many chemo choices due to only having one kidney....

Dam - she was just back to how she was prior to chemo and then whammo - its in the brain!!! Very confused in the hospital, but they said it was from a combo of the steroids to reduce swelling, the radiation and the traum she's been through.

I don't know how I will ever get over this! Sure makes you realize how short life really is and how it can change in the blink of an eye.

Thanks for your support.

Randy - my sympathy for losing your wife so recently.

Don - you are a trooper and mean fighting machine! You give me inspiration!!!!

k

[dihen]

Kathleen, not much more to add but wanted to let you know that your mom will be in my prayers. I read your profile and saw that your mom and dad celebrated their 60th anniversay, that is so wonderful, and they apparently produced a very loving and caring daughter in you. God bless you all as you continue to fight this beast!!!

[karen335]

Kate,

How many brain radiation treatments does you mom have to have? I had a brain met twice and had surgery twice to remove.

Go to the site Don M. recommends. It is a great site and there are doctors who will answer your questions, regarding Cyberknife..Sending prayer for mom and family.

Please keep us posted..

God Bless and hugs,

Karen

[Carleen]

Kathleen

I just wanted to say how sorry I am for this recent development with your mom.

She will continue to be in my prayers and I hope this radiation will kick those nasty cancer mets to heck.

If it will offer any hope, I want to tell you that my husband was diagnosed with over a dozen brain mets and had radiation for them. Those mets have been stable ever since and that was in October 2004.

Brain mets do not mean a cancer warrior is nearing the end. Once upon a time, they signified the end of the road because there was little that could be done for them, but not anymore. Stay strong and stay hopeful. Your mom will conquer this too.