Timeline

DaisysGus · Regular Joined: 18 May 2009 Posts: 15

I am new to this forum, but am at a loss as to what to expect next. My 62 year old mother was diagnosed with stage 3A NSCLC in January 2008. She had surgery that April which 35% of her right lung was removed. That was the maximum they could remove to keep her breathing on her own. She endured chemo and radiation for the next 6 months, and thought it was beat. Had a CT scan in December, nothing appeared. Had another in March of this year, and a new tumor has appeared in the same lung. She has pleural effusion and had it drained last week. They were able to drain 300cc, but the ultrasound radiologist couldn't get the rest out. Apparently it is metastisizing in the bottom of the lung and becoming a solid mass. We go back to the doctor on the 27th to see if they are putting in a permanent drain. She has decided that she doesn't want to do chemo again (which is the only option left). I know her time is limited, but being her primary caregiver, what timeline should I prepare for? Her lungs are filling fast, and she's in constant pain. Any thoughts would be appreciated.

pbj11 · Site Admin Joined: 12 May 2007 Posts: 2400

Hi,

I'm so very sorry that your Mom has had the cancer come back. This is so common with lung cancer and she was pretty lucky to have gotten rid of it at all for any length of time.

It does sound like it is on the march and causing problems due to the pleural effusion. At least they are addressing this and she can be a little more comfortable without fluid build up. (The actual fluid is not in the lungs, but in the pleural sack surrounding the lungs.)

Has she been offered Tarceva or is she a candidate for this? Tarceva tends to have the least side effects as it is not traditional chemotherapy. It's a pill taken once a day.

Unfortunately, nobody can really give a timeline because each person is so unique. Things can go for a long time or suddenly spiral out of control. There is no way of knowing what is around the next corner.

I'm sure this isn't what you want to hear. As her primary caregiver, just try to stay on top of issues as they arise. If she isn't seeking more treatment, then hospice should be contacted and in place to give you professional help with her at home. Apparently they are a Godsend and give a lot of support to caregivers. It's not an easy job ahead of you, to be sure.

Please keep us posted and my best wishes to you and your Mom.

God bless,
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

DaisysGus · Regular Joined: 18 May 2009 Posts: 15

Thanks for the wishes. I know they can't say for sure on a timeline, but if anyone else has gone through similar events, I can estimate. They told her she could do some chemo to relieve the discomfort, but other than that, there's nothing else they can do. She was very ill with the chemo last time, so she said no. I am in the process of getting hospice set up, and also completing a long list of things she wants done. It's heartbreaking to see such a strong woman become the person she is now, but my sisters can't be bothered to help at this point. That's on them, I have my hands full with my own family and mom. The way she's declining, I think I will be surprised if she is here for the whole summer. Thanks for listening, and I will keep you updated.

zinger · Posted: Mon May 18, 2009 7:18 pm Post subject: Re: Timeline

Hi Daisys,

We had hospice for both my Mom and my Dad. Hospice is usually not offered until the physician determines that the patient will live 6 months or less in most cases. I can tell you from personal experience that they are wonderful, caring, compassionate caregivers who focus not only on the patient but on the entire family's well being in a difficult time. For my family, they were angels on earth. Keeping the 6 month timeline in the back of my mind made it a little easier to focus on finding the blessings in each individual day. I hope it helps you to do the same. Take them one day at a time, and make each day count. Take care, my friend. You are not walking this path alone.

Cathy
_________________
Dad ~ lung cancer diagnosed Dec 18, 2003, passed Mar 3, 2004.
Mom ~ lung cancer diagnosed May 27, 2008, passed June 1, 2008
They're waltzing once again...

DaisysGus · Regular Joined: 18 May 2009 Posts: 15

Thanks for the encouragement. I am enjoying as much time as possible with her, and I know it means more to her than anything else. I feel the same way. I will keep updating as the news comes in.

maryaz · Posted: Mon May 18, 2009 11:13 pm Post subject: Re: Timeline

DaisysGus; So very sorry to read your story. My heart goes out to you. Your Mom is so young yet. It scares me too sometimes because my husband had 2 lobes of his right lung removed a year ago this past Saturday. His actual diagnosis by name was also January, 2008.We are thankful all is okay. I think it always stays in your mind that it will be back.

Heed the words of pbj11 as those are good suggestions. My husband also has had problems in the lining. I am always saying it is the choice of the patient as to what they want to do. In my opinion, it does have to be a choice based on knowing the options.

I will be praying for you and your Mom and your siblings will possibly have regrets to live with. You can only do what you can. You have to continue caring for your family in order to also be there for your Mom.
_________________
Mary

Husband is 67 year old Male
NSCLC - Squamous Cell Carcinoma
Chemo and Radiation Treatments together
Allergic reactions to Taxol and Taxotere.
The Story: http://www.cancerforums.net/about9079.html

arasara · Regular Joined: 06 Mar 2009 Posts: 49

Daisy, I am so sorry you're going through this Sad

Pleural effusion is the worst to have to deal with Sad

I think your docs should be able to give you somewhat better of a time line. I know with my gram they were willing to set her on a schedule should it come to it to drain the fluid. They were able to keep her breathing pretty well with her inhalers and nebulizer treatments though. I know with us, we were REALLY unprepared for my grandma to pass and since she has gone, everything is a HUGE mess. If we had it to do over again, immediately after the diagnosis, we would have had her teach us about her bills, investments, different bank accts, etc. It's been a disaster because she thought she was going to outlive my grandpa so everything is in her name (she was the banking queen!) - if you guys have a few good days, it might not be a bad idea for her to show you that kind of stuff so that if she gets really sick she can rest and not have to worry about it. Take care of yourself and remember to take some time out for yourself and just breathe - I know how stressful it is Sad

Thinking about you,
Sara
_________________
Caregivers to Pauline, age 72
Diagnosed with Stage IV NSCLC Adenocarcinoma on February 13th, 2009, passed away April 14th, 2009.

Fly high with the angels, Gram!!

DaisysGus · Regular Joined: 18 May 2009 Posts: 15

Thanks for the prayers. We are slowly getting things done on the legal side, just working on the list of what she wants done before she goes. Trying my best to complete it, even though some things will not happen. I figure as long as she keeps adding to the list, she won't give in to this Monster!

Keeping the faith!

Christine

llink57 · Posted: Fri May 22, 2009 4:54 am Post subject: Re: Timeline

[quote="DaisysGus"]Thanks for the prayers. We are slowly getting things done on the legal side, just working on the list of what she wants done before she goes. Trying my best to complete it, even though some things will not happen. I figure as long as she keeps adding to the list, she won't give in to this Monster!

Keeping the faith!

Christine[/quote]

Hello Daisy,
I too am sorry to read about your Mom, my husband has small cell lung cancer and treatment stopped this past Tuesday and Hospice is already here.
I'm glad to see you're keeping the faith.
My best wishes and prayers are for you and your Mom.
_________________
Deborah
Married since July 1976
My husband is 76 and diagnosed with Small Cell Lung Cancer in Dec. 2008.
which has metastasized through out his body, into the bone and brain.
Treatment has stopped and Hospice came in on May 20, 2009

DaisysGus · Regular Joined: 18 May 2009 Posts: 15

Just wanted to give an update. My mom went from having the nurse 1x/week 2 months ago, to 3x/week for the next 3 weeks, and now has her coming every day. Her breathing is getting worse, and they have increased her medications weekly. The hospice doctor is visiting her on Monday, and it looks like she is going down fast. I have asked the doctors about changing some of her meds to a pain patch, since she's taking way too many pills and hates it. They are looking into it. My sisters have finally agreed to come visit for a couple of days at the end of the month, but my mom doesn't really want them around. I told her they needed to come, even if it's only for an hour visit. She is angry at them for not being here through it all, and that they left every part of her care in my hands to deal with. I have assured her it's okay, that I am a strong person and can handle it. It was pretty hard to go to the funeral home and cemetery to get everything in place, but I know it's what she wanted.

By the looks of things, she will be in hospice before the end of July. Her activity level went from 60% 2 weeks ago, to a 45% yesterday. Things are moving so fast, and I'm just trying to deal with it all. This forum and the people here are a blessing and I want to thank everyone here. Without you, I think I would lose my mind! I have her health and well being as my first priority, and have never regretted my decision to stop working to take care of her. It makes it hard on my husband and kids at times, but they will hopefully understand one day that this is something I needed to do.

melkissa · Posted: Sat Jun 13, 2009 8:31 pm Post subject: Re: Timeline

I am so sorry to hear that your mom is declining. I understand what you mean about pain meds... with my dad we finally did Hospice so we could get him on a morphine drip and it helped immensely. Hospice is truly a fantastic organization and I have vowed if I ever win any large sum of money I will be donating much of it to them. I am sorry to hear how your sisters are acting about everything. Everyone handles situations like these in different ways and for some people it is easier for them to turn their head and pretend it isn't happening. Sadly, I am sure many of them come to regret it when they lose their loved ones. Just remember that will not fall on your shoulders. How your sisters choose to handle the situation is their issue, not yours. You can only give your opinion and hope they make the right decision. You have enough on your plate- you really shouldn't have to worry about them. Sad

Your mom sounds like a wonderful, caring person to worry about you at a time like this. I'm sure it is hard to feel like you are a burden to someone else but many times the care givers would have it no other way. I am confident your husband and children understand your absence and probably look up to you for being such a strong caring person. Your time with your mom is limited and I am sure they can sympathize. I am glad you are enjoying the forum as well, it helped me a lot too. Please keep us posted and many hugs to you and your family. You will be in my thoughts.
_________________
My dad was diag w/nsclc stage 4 & mets to spine & hips on 11/08 at age 43. Large mass on R lung & collapsed L lung. No surgery so chemo & rad 5d/wk. No results. 4/09 rushed to the hospital b/c breathing issues. Hooked up to o2 & treated for infection. Released when o2 levels were good w/help from Hospice at home. In Hospice as of 6/2/09. Passed 6/10/09. Missing you forever daddy.

onecoyote · Senior User Joined: 15 Jul 2008 Posts: 150

Hi,
I am very sorry to hear what you and your mom are going through. I am in a similar situation with my husband. I have no family help, just myself to care for my husband. His family is not participating at all unfortunately. It can get very rough even with Hospice helping, the burden is heavy to say the least. Just realize that your mom is profoundly grateful to you for being there at the most vulnerable time in her life.
Maybe that is true what was said about doctors recommending Hospice for people with less than 6 months left. I find it hard to believe though that they can predict a time frame as everyone is different. My husband has all of a sudden rallied this week, is eating like a horse, is animated and is down right witty. It is wonderful to see but deep down I know that this will be short lived and the roller coaster will take another plunge. My heart goes out to all of you who are making this journey. I would not wish it on anyone.
Charlene
_________________
Husband Danny, age 66,
diagnosed squamous cell June 6, 2008,
Right pneumonectomy performed with no adjuvant chemo or radiation on Sept. 2008
Metastatic lung cancer in the ribs, scapula and right kidney raised it's ugly head May 2009.
Renal cell carcinoma diagnosed May 2009
One round carbo/taxol, too weak to continue
Cancer racing like a freight train
Held my husband's hand when he passed away September 29, 2009

DaisysGus · Regular Joined: 18 May 2009 Posts: 15

Latest Update.

Well the Hospice doctor has seen her, and I was correct to think it's progressing faster than expected. He agreed that she will be in full hospice care by the middle to end of July. If she has a drastic turn, then earlier. He has changed most of her meds to help her, and to eliminate some of the nausea she is having. Less pills, and more effective pain control. There is some more pleural effusion, but not enough to drain at this point. He is coming back in 2 weeks to see how she is with the new meds.

She's sleeping more and more each day, and is on the latest emotional rollercoster. Give me strength to help her, I feel like sometimes it's not enough! The doctor has given her 2-4 months. I'm still trying to make time for myself and family through this, which is necessary. I'm so grateful that my boss has allowed me as much time off as I need. Not many workplaces out there would give you 6mos. - 1 year off without any questions.

Anyways, just wanted to let everyone know. I will update again in a couple of weeks if there is not changes.

Daisy

melkissa · Posted: Tue Jun 16, 2009 10:40 am Post subject: Re: Timeline

Big hugs to you Daisy. Keep us posted.
_________________
My dad was diag w/nsclc stage 4 & mets to spine & hips on 11/08 at age 43. Large mass on R lung & collapsed L lung. No surgery so chemo & rad 5d/wk. No results. 4/09 rushed to the hospital b/c breathing issues. Hooked up to o2 & treated for infection. Released when o2 levels were good w/help from Hospice at home. In Hospice as of 6/2/09. Passed 6/10/09. Missing you forever daddy.

maryaz · Posted: Sun Jun 21, 2009 1:08 am Post subject: Re: Timeline

Daisy, Sorry that things are moving as they are. I just popped in to get caught up. So sorry to read about several people not doing well. I sure wish they could get some way to knock this cancer out and people would not have to suffer so. It affects everyone in the family.

Hang in there yourself. You are doing what you need to and will be glad you did when you look back. Your Mom is in good hands. You are so right about your boss. Very fortunate.

I will have you and your Mom in my prayers.
_________________
Mary

Husband is 67 year old Male
NSCLC - Squamous Cell Carcinoma
Chemo and Radiation Treatments together
Allergic reactions to Taxol and Taxotere.
The Story: http://www.cancerforums.net/about9079.html

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