Mom with Stage IV metastatic, liver, spleen, spinal tumors things getting worse and I'm just so mad about options
I guess this is more of a vent because I wouldn't even know where to begin with a question.
Mom diagnosed with breast cancer stage IV 2005. Mastectomy then put on Arimidex. Then the doctor found spinal tumors and immediately said chemo. My mom and I refused. I had to look up Zomeda as an option and now she's taking it. For 4 years she has been very well on Arimidex and Zomeda. She said that she doesn't even feel sick. So all was well.
Then about early this year she was told she has some spleen and liver tumors. The liver was the concern. The doctor felt that Arimidex wasn't working and despite my mom's fight, she put her on Tamoxifen. I know my mom from the get go didn't want to go on it so she immediately got off sighting side effects. It may be true but I think it was her thinking heart attack and uterine cancer. So now she's on Aromasin (Arimidex's cousin). The doc ONCE AGAIN pushed chemo but she refused. She stuck with Aromasin and Zomeda.
Now with her latest CT she's been told her liver tumor jumped from a 26-36 and once again chemo options are discussed. Xeolda or Tetratere. She doesn't want either because she has many infections throughout her life and the reduction of white blood cell count risk, hand/foot syndrome, etc. Plus her veins are so bad they want to put a shunt in there and she doesn't watn it so Xeolda would be her better option. However, it's $850-$2000 a month. She's trying to figure out cost options (Medicare, etc).
My anger is with her doctor:
1. Why did I have to suggest Zomeda? She was told there was no such thing for her. Well wow, doc, she's been on it for 4 years and did extremely well.
2. What's with this chemo push? I'm getting sick and tired of it. It's like it's the lazy option. No other options are ever given to her. Today I read about LITT therapy for liver tumors. Why isn't this looked into? Why am I the one reading cancer journals and printing them out to give to my mom to give the doctor?
3. The doc's time management. She didn't give her full CT results, she didn't tell her with or without chemo what is her life expectancy, she didn't explain pros and cons. She rushed her out the door with a tape!
Now my mom's reques of me calling the doctor and asking flat out what's going on and how long and then I have to tell my mom how long she has to live.
I'm just so angry. Why am I the go to person in this situation doing research, asking questions, being the go-between between patient/doctor? Why can't this doctor get her act together and act like she gives a @#$# and stop pushing the @## chemo?
The major problem is my mom's home situation. Second opinions were never an option because my dad refuses to go anywhere but his hospital and related docs.
Do you think the doctor was trying to save her life with the use of chemo? Why do you think the doctor was pushing chemo? DO you think there was some other reason for pushing chemo therapy other than the patients welfare?
My wife received her biopsy last December and didn't know her cancer had spread until April. I am mad about that also. There are not always answers. Do we ask the questions correctly. I struggle with that all of the time. The same thing happened 10 years ago when our 3 1/2 year old son died.
My wife began with zometa and Xeolda . She was on Xoelda for two cycles and was very sick. Her CEA went up to 5700. She was very sick and went from 125 to 112 pounds. My wife didn't want to try chemotherapy. She didn't know how bad the cancer was as it spread to the bones and liver at that time. We needed to respect what she wanted. I had to keep on top of every step needed to proceed with testing. We saw the Oncologist earlier then scheduled. She said we can try adding an agent and since my wife didn't want chemotherapy her hands were tied.
I said "Your hands are not tied anymore!". My wife began Taxol and Gemzar two days later. June her CEA was 5700. Two days ago her CEA is 888. She has lost 90% of her hair and she is very weak. She is 46 and was very active and fit before the cancer.
There is no right answer. The oncologist may be good or just approach treatment differently. We had a second opinion and he said she should have began hormone therapy first. Every doctor is different. She must trust her doctor or move on.
We have good insurance and I am sorry for your financial problems. It is very expensive. There are no right answers.
I just talked with the doctor. See my mom has zero clue what is going on and that's the problem. She can be extremely difficult so it's a problem communicating with her.
The doc said that she has liver and lung tumors. I knew about liver but she has lung. she said that the Arimidex and the drug class it belongs to obviously isn't working so her only options are all of these chemo choices.
She recommended Xeloda because 1) well tolerated (I don't know how any chemo is well tolerated) and 2) the cycle its' given is easier than infusions and thought it was best.
I have zero clue about the counts you give since I'm not privy to that and she's been doing so amazingly well.
The doc said that most cancer patients in her scenario don't make it past 3 years including with chemo. Seeing that she's been totally fine and zero side effects for 4 years and just now things are spreading, that's why the Xeloda is her first choice for her. She said that with the chemo trial and error options it's up in the air on how long but she can say past Jan is a good outlook. It can be up to 3 years but my question is quality of life. Chemo is no fun and I don't want to put her through this junk.
But she said without treatment it could be 3 months or more. Her cancer is just sputtering along until now but until she gets a definative result from a test saying it's aggressive, she can't say.
I don't know what to tell my mom. She is relying on me to give her a decision. I hate all chemos and don't believe any of them are well tolerated. I don't want to be responsible for her sickness by saying try one cycle and see how it goes.
It's an awful and unfair position for her to put me in. She will totally blame me if it doesn't go well.
Xeloda is an oral chemotherapy. If it is effective it is much better then interveonous chemo. Xeloda was not effective for my 46 year old wife. My wife would have died if she didn't start the Taxol and Gemzar. Her blood cancer markers went down 85%. Our doctor said she might live 2-5 years. This is a clinical prognosis. Many women live longer and the longer she lives we hope for updated treatment.
In my opinion we need to do what we can now so she can have as much of a normal life as possible. I have been lucky to take off work when needed to help my wife and she spends a lot of time with her Parents during the weekdays. It's not easy. She didn't what to go through the chemotherapy. One round of chemo isn't the answer because she needed three cycles for it to begin showing results. She is finishing her 5th cycle and if all goes well just one more.
The cancer is not cured but controlled for now. If you don't control it you die. If you control it and endure the chemo you live and feel normal again.
Everyone has side effects
My wife's side effects
Constipation -- now controlled
Couldn't sleep-- now controlled
Very weak day 3, 4, 5, after chemotherapy
Weak but not as bad the rest of the time
Legs feel very heavy ( I give her leg massage two to three times a day)
Restless but no energy to get around (we have been on many outings using a wheelchair)
Lack of Appetite --- now controlled
Remember that all the side effects listed don't always happen. We looked for the hand foot rash but it didn't happen. They have great anti-nausea medication now.
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