Sister just dx Stage IV NSCLC with multiple brain mets

jlmjez · New User Joined: 20 Aug 2008 Posts: 5

Hi everyone,

This is my first post to this group. On Aug 1 my 58 year old sister was dx with stage IV NSCLC with multiple brain mets. She had no signs of lung cancer, she was having really bad headaches and lost some of the use of her left arm and leg, and fell a few times. We thought she had a mini stroke. She wasn't in the DR office for 30 minutes before he was admitting her into the hospital and within 2 hours he told her she had brain cancer. They then scanned her chest and found the lung cancer. She then had the broncoscopy of her lungs and it was in lymph nodes in the center of her chest and it was determined to be NSCLC. They can't operate, there are "several" brain tumors (they won't give us the exact number). Without treatment they say she will be lucky to be alive in 2 months, with treatment they say if everything goes "textbook" maybe 6 months. How often is there a textbook case?

She is getting chemo weekly, has had 3 already. They are giving her taxol and carboplatin, she has had 6 radiation treatments. Her headaches are so much worse and her vision is worse, she is dizzy, and in the last day or 2 her fingers and toes are numb.

Her husband was dx with lung cancer in 1/05 He went through the lung surgery and chemo and had a clear PET scan in Feb of 06. A month later with no symptoms it was found in his brain and with radiation treatments he died in 3 weeks.

So these are my quetions:

I know everyone is different, but if the brain mets caused problems before the lung cancer did, and they have told her they can't cure her. I would assume that she is in pretty bad shape. If her husband died with in 3 weeks and no symptoms how can they estimate 6 mo for her?

Why is she getting worse so fast? Is it the side effects of radiation and chemo or is her cancer spreading in her brain?

She had kids and grandchildren that just lost their father and grandfather, she is desperate to know how much time she has left and the doctors do not want to talk to her about it, I mean.... are we looking at weeks or months?

She lives with my 84 year old mother who has already had one child to die, I don't know how she'll be able to go through this again.

Sorry this is so long. Would appreciate any advise or input to my questions. Thanks in advance.

simplyklb

Hi,
There is really no way to know how long someone will live. My dad was given 1 to 2 years when he was diagnosed back in May of this year. Recently, he's been told that he could live another year. It's just a best guessimate.

It sounds like your mom has neuropathy. My mom has that too. My mom has lung cancer too and was diagnosed this past May. The onc has decided to stop her Carboplatin and Taxol after this round. She's going to have a scan on Sept. 8th to see where she is at and then an infusion of Avastin (her fifth). Onc says he may do some radiation on her. When she sees them on the 8th, I will ask. She had an appt. this past Mon. when she had chemo and I didn't go because no one told me she was having an appt. with the onc.

I am a challenge since I have lots of questions. Smile

I am not shy about asking. Plus the onc is pretty darn good in my book... It is almost like he can read our minds. Smile

Kristi
_________________
Dad - Andy, 70, diagnosed with SCLC in May 2008
2/20/38 - 10/15/08 Fly high, Dad!
Mom - Jackie, 67, diagnosed with NSCLC in May 2008

dano · Last edited by dano on Sat Aug 23, 2008 6:09 am; edited 1 time in total

Hi Jez;
For sure there is no text book case, just text book averages. My docs will never give a date for that reason. Every body is different and reacts to medications differently. The chemo and radiation can take a toll on you all by themselves, it mixed me up not knowing what was doing what to me. The combo your Sister is on was real hard on me, but I guess it is hard on the cancer as well. The brain mets are scary, they scare the doctors too, because there is no crystal ball they can see in and know whats going on in your brain. With larger mets in the brain they have a tendency to swell after being radiated, that can cause many problems and may be temporary. But the doctors can't say for sure which is causing what for sure, just best guesses. A lot of prayer is needed, faith is important for a stable mind. Hope you can get your answers Jez.
God Bless
Dan
_________________
54 year old male in Hawaii
Diagnosed Nov. 9,2007 with NSCLC IV
with Mets to the lymphs and brain
Had full brain radiation treatment in Jan 08
Currently on chemo treatments every 3 weeks
with Alimta
and taking Lovenox for blood clots
Now back to work full time
http://cancerforums.net/viewtopic.php?t=9993

sgodshall · Regular Joined: 06 Jun 2008 Posts: 42 Location: Tennessee

I'm so sorry to hear of your sisters DX. My husband has the same, LC with brain mets. He has 5-6 brain tumors. He has had whole brain radiation (WBR), Carbo/Taxol chemo and just finished today his last stereotactic brain radiation. The doctors have never given us a timeline, just concentrate on whatever problem of the day. Steriods helped alot of his "Mets" symptoms - headaches, confusion, vision problems, etc.

This forum is a wonderful resource - for knowledge, comfort, "someone" to cry to. I send prayers to you and yours. Take a deep breath and get ready for a new journey.
_________________
As long as there is Life, there is Hope.

Husband (44) with LC, mets to brain, lymph nodes and bones. Received Carbo/Taxol, awaiting new treatment. Had WBR, stereotactic radiation to brain

jlmjez · New User Joined: 20 Aug 2008 Posts: 5

Thank you for your replies. It helps to talk to someone who understands what we are dealing with, especially when it is so new to me and I don't understand any of it.

Today the radiation onc. took x-rays of her brain. I'm not sure if that is something they do every few weeks, or if it is because she has been having such bad headaches. She has only had 7 radiation treatments. I don't even know if she is getting WBR or not, she seems to think not since they have made this mask that they put on her face and marked 4 different spots for the radiation to target.

Lung cancer is such a horrible disease. I guess it is a new journey for my sister and our family, a journey no one wants to take. I will help her through this as much as possible, really we are blessed because there are several that can pitch in when needed.

You all will be in my thoughts and prayers.

dano

Hi jlmjez;
Your right about the WBR, the mask proves that it is not WBR. The fact that she has had 7 treatments is a statement all in itself, the brain mets must be fairly large. Side effects should be mostly due to swelling of the tumors from the radiation, and no telling what that may be like. In the end it should get better, but possible hell at times on the way. Good luck to you and your Sister, I hope you get all the right breaks.
God Bless
Dan
_________________
54 year old male in Hawaii
Diagnosed Nov. 9,2007 with NSCLC IV
with Mets to the lymphs and brain
Had full brain radiation treatment in Jan 08
Currently on chemo treatments every 3 weeks
with Alimta
and taking Lovenox for blood clots
Now back to work full time
http://cancerforums.net/viewtopic.php?t=9993

galwaygirl · New User Joined: 10 Feb 2008 Posts: 6

my mom 69 also has lung cancer with mets to the brain, she was diagnosed dec 14th 07 and she is still doing well considering the docs told us she would probably die anywhere from 4 weeks to 6 months max, she is now nearly at 9 months. Mum had 5 wbr but decided not to take any chemo and considering how she is i think there is a lot to be said for not having to endure that suffering on top of everything else. Chemo won't cure brain mets its only to buy extra time but would you want it. Mum now lies in bed all Its wierd being trapped in this time warp bubble where we cant move forward and try to live life for the day, when she will pass who knows only god but thankfully she only suffers the odd time from a headache which is how this illness first started in july 07. I hope things work out well for your sister, things to watch out for a mini seizures there are epilectic medications for this tegratol or keppra, nausea - use stemitil in tablet form as the injjections are intermuscular and severe, blood clots from no longer moving - innohep injections which are subcutaneous and not too sore, it can go from constipation - use codalax to diarreaha - use immoduim but pallative nurses should give you all that info. We all feel at this stage we are non-qualified medics having no experience of illness and we have no idea of what is to come as we have no experience of death either but we struggle on because its for MUM.

Ckim · Experienced user Joined: 15 Aug 2008 Posts: 52

Brain mets are survivable. My dad was DX with them right after Thanksgiving and he is still alive and fighting. He's not doing all that well, but he is alive and he is fighting. So, that makes it 9 months so far.

And he had WBR plus cyberknife--that and the steroids worked very well.

No one, but no one can tell you how many months or years you have left.

There are so many variables.

good luck--I hope you have much more time together!

pbj11 · Site Admin Joined: 12 May 2007 Posts: 1262

Hi,

I'm sorry to read about your sister's diagnosis. What a nightmare for your family.

WBR isn't usually done for NSCLC, so everyone is right. They went after the specific tumors. My brother-in-law had one tumor removed and they did rads on the other three. He did a few different lines of chemo and lived almost three years. My husband had no brain involvement and lived a little over 2 1/2 years. It's doable.

The combination of radiation to the brain, steroids, and chemotherapy will often make it look like the patient is getting worse from that cancer when it is all the side effects from the treatment. In time, if the chemo is working, you should see some rallying from her. I hate to hear she is having headaches, but glad the docs seem to be on top of the situation. Radiation continues to work for a good 4-6 weeks after it is stopped, so they are probably checking to see if more tumor reduction has occurred or if there are any complications from the rads. (Swelling, etc.)

You are right --- this is one hell of a journey that nobody needs or wants. Try to hang in there and keep encouraging your sister. She needs a lot of support now, especially having lost her husband. My heart just breaks for her.

She needs to make sure the doctors are aware of EVERYTHING. Peripheral neuropathy can be a nasty and painful thing. They may want to switch up her chemo so that this issue can go away.

There are no timetables and I hate it when doctors slap a number on something when they really have no clue. Granted, survival chances are higher the more the cancer is contained in the chest/lung area, but I've seen amazing things happen for people with brain and bone mets.

Take care and keep us posted.

PBJ
_________________
Husband diagnosed with NSCLC Stage IV. (Non-Small Cell Lung Cancer) Fought & lived 2 1/2 years with multiple lines of treatment.

Post describing our battle: http://cancerforums.net/viewtopic.php?t=7026&postdays=0&postorder=asc&start=0

jlmjez · New User Joined: 20 Aug 2008 Posts: 5

Thanks again for the replies....

To give you a little update: My sister met with her onc. today. He said her scans showed cancer in the lower right lobe and some cancer in the left lobe as well. He said her lymph nodes all through the lung area were cancerous. She is supposed to have about 20 radiation treatments and when those are done, he will give her some stronger chemo, instead of weekly treatments, she'll have one every 3 weeks. Then a PET scan later to see how the cancer is responding. She had her 4th chemo treatment today and her 9th radiation treatment. She is having a few side effects: nausea, throwing up on the 5th day after chemo, numbness in fingers and toes, dizzy, and headaches. The headaches seem to be the hardest for her to deal with.

For someone going through so much, she is so at peace. She has not been angry, she hasn't cried, she said she is ready to "go" so she can be with her husband. She is enjoying every minute with family, she wants everyone to go bowling this weekend (she'll just watch). She keeps thinking of places she wants to eat "one more time". She is cleaning out drawers and shredding papers so her kids won't have to do it after she is gone. She is giving everyone the things that she wants each of us to have. Even though the doctor did say she might have 6 months, she told me she'd be gone by the holidays.

She is so selfless, she worries about all of us dealing with losing her. She has told me that I'll have to help our other sister get through this and she is worried about our mother and of course her kids and grandkids.

She is my hero.

Sorry for rambling on and on, I am just so amazed.

You all are in my prayers. This disease is so ugly and devistating, bless you all.

Ckim · Experienced user Joined: 15 Aug 2008 Posts: 52

She has opted for certainty. This disease takes away so much control of one's life--it sounds as if she has taken control back by meeting the disease face to face.

I hope that you are able to make the most of the time you have left together and that her sense of peace will be a comfort to you and to your family.

Wishing you hugs, prayers and peace!

jlmjez · New User Joined: 20 Aug 2008 Posts: 5

Hi, I have a few new questions and maybe you can give me some insight into what is going on with my sister.....

She just finished 20 brain radiation treatments. She has had 6 weekly chemo treatments. Friday she had an MRI of her upper spine to see if the cancer had spread, if so they will want to do more radiation. She doesn't have to take any treatments this week, but next Tuesday her onc. said she would start a new, stronger chemo and would only have to have it once every 3 weeks.

I realize this has been a lot for her to go through. She is losing her vision and her hearing. She can't stand up for any amount of time, she is so weak. She is coughing a lot and often there is a little blood. She gets very confused about things. She'll ask a question, we answer it, and then she'll ask it again or think we gave her a different answer...Just so not her! Her head aches so bad when she talks to us she keeps her eyes closed and rubs her eyebrow to try and relieve the pain. Her feet and ankles are swelling......

I am wondering are these side effects from the treatments? Or is she getting worse? I saw her doctor the other day and he told me she wouldn't be around a lot longer, and it might be time to call hospice. I just have this hope in my heart it isn't time yet. Everytime we see her we can see her going down hill, but I just tell myself the radiation and chemo is no walk in the park and maybe that is why she is having these symptoms and maybe she'll get a little better before she gets worse.

I would any input.

Thanks, Janie

dano

Hi Janie;
How old is your sister? Information on her is a bit week for understanding things. Are you a care giver or are you helping out?
I started out with weekly treatments of taxol and carboplatin I think it is pretty strong treatment, I got the 4th week off and then the same treatment that lasted 3 weeks, my ankles swelled a bit, but I had lots of side effects which at the time I was not sure if it was the cancer or not. Those were scary times, but most everything was due to the treatments, like I lived off of Ensure because I was afraid of getting sick to my stomach. I was dizzy at times too. After all those treatments they stopped them because my glands in my neck swelled up. I thought that it was the cancer getting worse, I think docs thought so too. So they started WBR ( my brain Mets had grown from 6 to 12 in count though fairly small). Before WBR I noticed extra swelling in my left leg, they sent me to the hospital and found I had a large blood clot behind my knee. I was put on Lovinox injections to thin my blood, which helped me to eliminate clots all over my body including in my lungs which stopped my persistent cough.
Most all of her symptoms are from the treatments. When tumors in the brain are treated it is always hard to tell what is causing what, the best person to learn from was the Radiologist, they know their stuff and what can happen. How ever when brain mets swell from the treatments they put pressure on the brain and and many symptoms can result, many are temporary. It's been 8 months sense WBR and my hearing is still messed up. It sounds like your doctors are being very aggressive which is good for her in the long run. God bless you and your sister, your in my prayers.
Dan
_________________
54 year old male in Hawaii
Diagnosed Nov. 9,2007 with NSCLC IV
with Mets to the lymphs and brain
Had full brain radiation treatment in Jan 08
Currently on chemo treatments every 3 weeks
with Alimta
and taking Lovenox for blood clots
Now back to work full time
http://cancerforums.net/viewtopic.php?t=9993

jlmjez · New User Joined: 20 Aug 2008 Posts: 5

Dano, thanks for the reply.......My sister will be 59 next week. She lives with my 84 year old mother, I am the only one besides my mom who does not work, so while I am not the complete caregiver, I try and help as much as she needs me. I take her for treatments and go to the doctor with her most of the time.

It is easy to get emotional and caught up in "is this the end" mode. Your reply helped me a lot.

Thanks again, Janie

dano

Hi Janie;
Sorry I try to read between the lines some times and it's hard when there are pages missing! lol. Thanks so much for the info. What do you mean you don't work! You actually set around all day? lol....I doubt that. Oh you don't have a regular pay check. I've been there.
Please come in and ask questions, these are unsettling times you are going through, hard to get the answers you want from some of the doctors. My main Oncologist is a great lady and cares deeply for me personally but has a hard time answering hard questions. I make it hard for them to forget me because I try to keep them laughing. I learned to get the info I need from other doctors that can communicate. You and your mom may not go together often or spit responsibilities I'm not sure, but if you can work together as a tag team to get your answers to questions, my wife was a help doing that with me. Still I got some of my questions answered only in here. Is your sister loosing weight? I did, I lost 45 lbs. of course I started at 260. After a change in treatment and 8 months latter I've gained some of that back thanks to a much better appetite and a love for food. But that all came back slowly, one food at a time, if I thought I wouldn't like it, I would give it up if I ate it, not that I felt sick but certain smell trigger a response that I can't stop. But most of that I am over.
What I'm sharing is there can be a brighter side to come, just fight for it. And make this time together special, because it really is, between you and your sister and you and your mom. In the normally dog eat dog world we take time with each other for granted, with this new experience you have a chance to make special moments count. I'm finding them now every day and they bring tears to eyes all the time and I love it. God bless you and your mom and a special blessing on your sister.
Dan
_________________
54 year old male in Hawaii
Diagnosed Nov. 9,2007 with NSCLC IV
with Mets to the lymphs and brain
Had full brain radiation treatment in Jan 08
Currently on chemo treatments every 3 weeks
with Alimta
and taking Lovenox for blood clots
Now back to work full time
http://cancerforums.net/viewtopic.php?t=9993

	Cancer Forums Forum Index -> Lung Cancer Forum	All times are GMT - 5 Hours Goto page 1, 2 Next
Page 1 of 2

A website for discussions about any type of cancer, including lung cancer, breast cancer, mesothelioma, prostate cancer, laryngeal cancer, leukemia, lymphoma, multiple myeloma and others