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my mother stage IV

cwinters5
Posts: 3
Joined: Mar 2006

my mother who is 58 was diagnosed this January with ovarian cancer it has spread to the liver as well as some localized lymph node involvement. Because of the cancer she has formed a blood clot that runs from her liver , through her vena cava into the right atrium of her heart. Because of this they will not operate, even sloan kettering in the city will not touch her. She is recieving chemo to reduce the tumors taxol/carbo and will be having her 4th treatment soon. She is on Coumaden to make sure the clot does not get any larger and hopefully it will start to break down. I know this is not a good situation and I am the only one of her children helping her through this. She did start on Zoloft 4 weeks ago but she still has no drive to live. Treatments are going well her CA-125 was at a baseline of 770 before her first treatment and is now down to 200. She does almost nothing anymore and I don't know how to get her to live. she acts like she is a child I am caring for.she won't fill out her own paperwork in the doctors offices, she won't even sign in, she also has me answer all the questions for the doctors like she has no clue of what is going on. She wants me to pitty her and I can't- I want to make the best of her life. Please if anyone has a similar situation, any advice on this disease,ect it would all help. She has also had to have a few blood transfusions because her hemoglobin goes low is that normal? what are the survival rates like if you can't have surgery???-Cathy

mopar
Posts: 1950
Joined: May 2003

Cathy:
My heart goes out to you. I'm not familiar with survival rates in this type of situation, but the fact that your mother's blood levels are coming down is VERY encouraging. Yes, she has quite a bit to deal with, as do you. But please don't give up hope. Many of us here have lived and are living with situations such as these. You have come to the right place. Hopefully, you will get many responses of suggestions and insights.

In the meantime, try to get your mom to be encouraged by what IS going for her (she's still rather young, blood levels are coming down, they wouldn't have started chemo if they had no hope, etc.). I know what it's like when a mom depends on the daughter so deeply for everything. But a suggestion - please tell her that she needs to start speaking for herself. There will be times you are not available, etc. and it is vital that she can express her wishes. And, we all need to allow ourselves a small 'pity party'. It's all so overwhelming and sudden when all of this happens. But she can have good quality of life - with your help, with all the meds available for side effects, etc. Does she have any hobbies, grandchildren, something she enjoys doing? Try to get her back to that. Watch some funny movies together. Take one day (one moment) at a time - don't look too far ahead. I could go on, but please let me know if this helps or if I am not specific enough.

Please keep us informed. We'll be waiting to hear from you.

Prayers and hugs.
Monika

cwinters5
Posts: 3
Joined: Mar 2006

Monika, Thank you very much for the kind and encouraging words. I made her take a walk today with my kids , just to get some fresh air. I noticed that she is more likely to act more able to do things around them.She used to love to read but I given her books she has wanted but does not touch them. SoI'll have to keep working on that. And starting tomorrow I will make her answer the questions for the doctors!I will let you know how this all goes. Thank you so much, again. Can I ask do you have ovarain or does someone you know have it? Is there any really big advice that has helped you?- Cathy

mopar
Posts: 1950
Joined: May 2003

Cathy:
I'm so glad if any of this helps. I am a 6-year OVCA (stage 1C) survivor, but recently a recurrent mass was discovered in surgery. However, all lymph nodes (11 of them!) removed were fine as well as the washing. So I started chemo again last month, and will have treatment #2 of 6 this week. As far as what has helped the most, is my faith. Believe me, I don't know how I would have gotten through some of the toughest times without a source of strength. Even though my family is so helpful and supportive, it's in the darkest hours (such as a night when I'm wide awake, in pain and the night is so lonely) that I pray to myself and just repeat scripture verses that bring me comfort. I don't think there's any one thing that will help otherwise. It's whatever works at the moment. And sometimes, what works one time, isn't what works the next. If there are other specific questions you have, please let me know. I'll be happy to try to answer them.

One more thing - Please let your mom know that I'm not far from her age (going on 52), and I would be happy to correspond with her personally, when she's up to it.

Until then, God bless you for being the loving and caring daughter that you are, do want to help your mom so much. All of you are in my prayers.

Monika

BonnieR's picture
BonnieR
Posts: 1549
Joined: Jan 2004

So sorry to hear about your mom. We are close to the same age. My cancer had spread pretty bad also and before surgery and chemo my ca125 was 2000. I have put your mom on my prayer list and am so sorry to hear about the depression she is dealing with and hopefully soon the fight mode will kick in. It is hard news and very frightening. Is there maybe a support group in your area she could attend that may help. And also let the Dr know how depressed she is as there are a lot of meds that could help her.

Transfusions are pretty normal after so many chemos. Sometimes they give shots to help keep the blood counts, I have had both. Right now I am a survivor of just over 3 years, it has been many chemos but worth every month it has allowed me to be here with my family. Maybe once the chemo shrinks the cancer your mom will be a candidate for surgery. Only time will tell.

How are you doing? Do you have a support system? Sounds like the stress is weighing pretty heavy on your shoulders and you could use some prayers also.

I am so glad you found this board the women will really support you.

Prayers and Hugs

Bonnie

imoan
Posts: 7
Joined: Feb 2006

Hi Cathy,
Sorry to hear about your mom. Don't give up. Its not unusual to get depressed. Its not easy to get thru it but can be done. I am a good example. It is now 2 years since I was diagnosed with stage 4 ovarian cancer. It was my daughter who nursed me back to health.It took about a year to get thru all the various treatments. There were many dark days and many hopefull ones. Keep your kids around her. My grandchildren were a blessing. I couldn't be grouchy around them. The antidpressant meds take about a month to 6 weeks to get into the system. If they won't work ask for a different one. There are several.Get your mom's friends to come & spend time with her. Short visits are great. Tell them to be positive & not show any pity .Friends could be very helpfull.Don't be afraid to ask for their help.Try to take a little time off while one of her friends is with her. You need to get a little breather so you can get back to it with renewed energy. I would be glad to answer anything else that you may ask - if I have that info. Thinking of you, Imoan

cwinters5
Posts: 3
Joined: Mar 2006

Thank you foe everyones kind support and advice.She just started taking her pain med more from the doctors advice and that seams to have made her feel better to get up and move around. I aslo bring my kids over and that does motivate her to get up. Small steps but working on it! Unfortunately today we did receive some bad news. Her cat scan results came back and it has shown that the cancer has grown. So they are stopping the carbo/taxol and I am not sure if they will coninue with a different Chemo. The doctor did not seem so optomistic today but he is going to review the films with the originals because her tumor markers were going down so we are not sure why it is still growing.He is going to call us for an appointment to go over things when he reviews the films again with the hospital.
What other chemo treatments has anyone recieved if carbo/taxol has ot helped?
Has anyone had where there tumor markers go down but it is still growing?- Cathy

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