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Small cell lung cancer stage 4 mets to brain and kidney

Tammy296
Posts: 2
Joined: May 2014

A week and a half ago, my mother collapsed from coughing up blood. Things happened so fast. What started out as minor coughing blood (as if that could be minor in any way!) almost ended to her demise. She coded, then became stable and was transferred to a major hospital in Maine. She was hooked up to a breathing tube, ng and feeding tubes for one week. When this occured unfortunately I was on a boat in the middle of the carribean ocean trying frantically to get home!!! Since we were on a 7 day cruise with only birth certificates to get us by, we were stuck. So fast forward to our return home, breathing tube is pulled after I realize my mother CAN communicate her wishes via blinking to me, I'm the one given the decisions. She sat for one week in one position becasue my father couldn't make one! I sit and watch while they do it. And then I sit some more... I've been by her side ever since. My father has been doing his usual. She was diagnosed May 7 with small and non small lung cancer stage 4. Unfortunately the biopsy from the tumor in the left lung (in her airway) was not enough specimen to tell exactly what kind of treatment was best. They couldn't perform surgery because the tumor is wrapped around a major artery supplying blood flow to her heart. Explains a lot why her blood pressure had been rising and falling for months now but with no additional clue, no one knew! She seemed fine when we left for vacation, her own self ensuring us everything would be fine. We only knew of blood pressure medicine and no other issues. So did she. Well everything was not fine!

This tragedy brought with it a terrible diagnosis we are all still trying to wrap our heads around....

The cancer has metasized mutiples to the brain and kidney. The lesions in her brain are anywhere from 1 cm to 7cm in size. I have seen them on scans for myself. She has lost some mobility to her left side especially and is only able now to walk with a walker. I am hopeful that will and can possibly change and I know she's a fighter! I have watched her everyday improve just a little bit and make some of the hardest decisions. She's not alone. She's got a lot of family beside her but also a lot of conflicting opinions as to what she should do! In the last day however I have seen no improvement. Yesterday she had a fever but snapped out of it quickly. Her appetite has been good, everything as she reports, great. Do I see changes in her? Yes. But I also feel she's lucid and competent to a degree.

I took FMLA from my job and made an immediate plan to spend as much time with her as I can (and have been so far) and through her treatment. Doctors tell us its palliative treatment only. We still hope and pray on a miracle. She'd had 5 radiation therapy treatments to her lung to shrink that tumor (and control the bleeding which was originally choking her and caused her to first flatline) and now she's on her 5th radiation therapy treatment to her brain for the lesions. The test results of her latest biospy to the liver have come back as a SMALL CELL lung cancer stage 4. So diagnosis changed only slightly ruling out non small. Much difference? From what I am reading it does not appear so...

The doctor gives her 6 months if she chooses without chemo and 1 year with. Everyone wants her home but home is not a safe place to be. My father relied on her completely and the anal retentive notion that he still will and her urge to smoke or drink or expereince stress still a fear. Whenever she experiences stress (and once she did in the last week...) she said she had that urge (mostly caused by my fathers idiocy).  I fear if he takes her home he will invariably kill her. He is a very controlling person.  She tells us she wants chemo but she also wants to go home. Is it her or is it my father? I really can't tell you. I'm sure it's a little bit of both. My father pushing for her to walk without the walker is now becoming a daily and it makes me angry for the pushing. My father did not feel my plan as explained that I would care for her everyday at my house, get a full time or part time nurse as needed and also work as I could whether at the office or from home, that they could be together still he come and stay, me take her up there when she wanted, was a good one (albeit that he would be too far and no longer living with her everyday or "in control"). You see my father also lives way out in the sticks not anywhere close to good hospitals who can provide treatment. I do. What if exsanguation happens again? What if she falls while he is not home (which has always been often)? They got lucky the first time around only because my mother chose to go with him on a ride when she began choking up blood. Knock on wood!   Dr's have decided that a residential facility is the only option for the next week to two weeks in order to get my mother strong enough to walk on her own as a means to meet chemo treatment. From there to the best cancer treatment facility in Maine for furthering chemo (probably nearer to my home) and then eventually with me.

I hope we are making the right choices. I would rather have my mother home where I can give her everything. Her fear is that my children will see her sick. My children and I fear we will lose her sooner if she goes "home", we will be pushed away and not be able to be there for her as we have been even while she's been in the hospital (which has been every single day giving her everything she needs and wants!) She will have every vice available to her and the feeling to smoke or whatever so rare. The stress at her "home" will eventually get to her I feel.

I just want her SAFE above all else but I am so heartbroken. I do my best never to let my children or my mother see me cry. Whenever I am alone, I do. Ten times over. I know that it won't do anyone any good to show otherwise. I keep myself busy thinking of ways to make her smile and bringing that to her. I would like for her to see a time when she can do anything she wishes again, be free from pain and has the ability to do as she wishes, even for a short time if possible, spending time with her grandchildren playing before it's too late and even if she wishes to go fishing with my father. To experience all of the things she would have chosen for herself had she not been living solely for the purpose of my fathers existence day in and day out. You see this isn't about me. It is about my mother and what's best for her.

Track records for residential facilities seems so negative as well. The whole deal is very hard on everyone right now. All I have is this place to write. I wish my mother did.

Am I wrong to hope and want her to fight for a cure when I know there probably isn't one? I want what she wants as long as it's reasonable and safe. She wants everything (even to try chemo) but everything she wants doesn't go together (her home and where she's to have chemo) so easily! They think it will be a walk in the park. Especially my father. I know however (having EMT background training) that it won't be. That it will take 2 days after treatments to recover. That she will need downtime a place to rest. That she won't want to be on the road an hour and a half each way to "get home".

But more so my question is:

In all recent studies and this disease as it's known, is there a chance for her? Possibly more than a year? How are doctors prognosis and estimations in line with reality? Guesstimates only?

My mother is my life and her life was/has been devoted to my father.  A selfish, selfish man. I grew up without much of a mother and it wasn't until my adulthood that my mother and I became so very close. She has been the cornerstone of every (hard) decision I have ever made. And she's so strong. She's withstood all of this radiation therapy so far with NO or very LITTLE symptoms. Can you believe it??? My mother is one strong lady!  Today she will find out what the dr's suggestion is. It's not going to be what anyone wants and I think it's going to break her heart but because my father will not allow me to take care of her here so I can keep my job and my house and she can be closer to a top notch cancer facility and be safe it's what the doctors have decided is best for her to be at a said facility instead. It's going to break her heart.  She could still decide today to go home and not do chemo at all. That is scaring me and my girls more than anything right now. That it will be easy for her to give up.

My oldest daughter is trying very hard to talk to her "nana". To show her a will to try and fight. That there IS a reason beyond what's "at home" - a life of duty.

Ladylacy
Posts: 770
Joined: Apr 2012

I'm so sorry to hear about your mother.  I can only image how hard it is for everyone.  Doctors don't know how much time anyone has.  All they are doing is guessing.  My husband declined all further treatment in January 2013 and today he is still with me.  Albiet there are major changes, but he is still here and able to do for himself.  Doctors never told us how long he has.  Only option offered him was chemo, but we were told it would only prolong, not cure and possibly hasten his time.  I don't know how old your mother is, my husband is 77 and has been fighting cancer for 4 years.  He has been thru 72 rounds of radiation and 10 rounds of chemo plus major surgery.  His decision was quality over quantity.  This should be your mother's decision.  Your father sounds a lot like my brother-in-law.  While my sister doesn't have cancer, she is bed ridden due to a car accident but he thinks she can get up and walk, something she can't do.  He is living in another world just like your father. 

Brain cancer is one of the worse there is.  It affects their whole body and personality.  Just remember not everyone responds the same to treatment.  What is easy on one person is hard on another.  Chemo is a poison that is put into our bodies and each body reacts differently.  If your mother choses not to undergo chemo, respect her wishes.  Talk with her doctor about your father and the option of hospice.  You can have in-home hospice.  My husband is on in-home hospice.  In-patient hospice is generally when pain can't be controlled at home or the patient needs 24/7 care and has less than 6 months to live.

I can honestly say, and my husband tells everyone, he would be lost without me because I am the one who handles everything.  If your father continues to push your mother to walk without a walker, she will fall and break her hip and that will be very bad.  Any fall would at this point. 

Wishing you and your family peace and comfort -- Sharon

Tammy296
Posts: 2
Joined: May 2014

you're right. A fall would be bad on any condition.

My dad does seem delusional about how things should be. I don't know. He has just always been a very selfish individual and my mother has always been giving, loving and lived for her family.

She and her dr chose for her to go to a rehab facility and get stronger for chemo. I knew that it was completely her choice. I was hopeful she would choose some place closer to me and my girls rather than closer to Dad and "the family" who seem to already have both of her feet in the ground already. She did end up choosing a facility very close to my house. It is extremely convenient.  My mother has a lot of fight and she's very strong. She is already asking me to look up good foods and diet to prepare her for chemo (foods they say that can help you during chemo vs make it harder to endure). This I felt was the fight in my mother to survive longer. She WANTS that so it seems. I hope she has the strength to endure it. I hope I have the strength to watch and help her endure it.

The drs only wanted to do 10 rounds of radiation therapy on my mother. 10 rounds? is that normal? Your husband has had a lot more. They did 5 on her chest and 5 on her brain. No sxs! except edema, uticaria... otherwise she's done incredibly well and making progress to become independent everyday. How did your husband do on his radiation therapy? Chemo?

Her medicare allows her 20 days at the rehab facility too. What's tough is that I have no siblings but I have children and a house and live alone. No partner. I am taking on everything I can to help my folks. Cutting back my hours at work and taking on FMLA to help my folks. It's already proving to be so tough.

I am amazed to hear how well your husband has done since his diagnosis. When he was first diagnosed was he diagnosed with stage 4 right out of the gate?

Sending good vibes your families way Sharon.

Tammy

Ladylacy
Posts: 770
Joined: Apr 2012

When my husband was diagnosed it was laryngeal cancer.  That's when he first underwent 35 rounds of radiation and 3 chemo.  He was stage 3 but only because of the size of the tumor, no spread.  No lympn nodes involved.  He was NED for a year when he decided to have a TEP to help him speak, but the specialist couldn't do it because he found a tumor at the cervical of his esophagus.  Surgery was ruled out so he underwent another 37 rounds of radiation and 7 chemo.  He was only NED for 4 months this time.  That's when we found out that the cancer at the cervical of his esophagus had returned much larger and that there we nodules in his right lung which after a needle biopsy we were told cancer.  By this time, he said enough was enough.  Only thing offered was chemo.

Chemo is very hard on an individual.  Many different side effects that last and last, just like radiation.  I have talked with a woman whose husband has been fighting lung cancer for 5 years.  He finally put a stop to all treatment too.  He did have radiation on the new spots in his lung.  Radiaition on the head and lungs are different than on the neck region.  My Aunt passed away from esophageal cancer that spread to her lungs.  She fought hard for over 3 years and then said she couldn't do it anymore.  She was 75 when she passed.  She always said that the chemo was worse than the radiation for her. 

Yes medicare pays for 20 days in rehab but after than you have to pay a deductible.  I have a friend whose husband was in rehab after a heart attack and he was there for 2 months and they had to pay $100/day after the 20 days.  Something you might want to check into. 

I wish your mother the best and you too.  Caregiving is hard and when you have a family of your own and a job, it is even harder, so take care of yourself too.

Sharon

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