Hi! – new member
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Tina, I am sorry to hear your news. I feel your pain and anxiety. my mother was diagnosed in August 2010. My mother has decided against chemo at this time. She is still recovering from her whipple surgery in August. stay in touch, sending much love your way.
Regards,
ronidinkes@yahoo.comMarion, yes I wish we would be meeting under any other circumstances…never in a million years would I have thought cancer would happen to me let alone such a rare form. Thanks for the search suggestion…it helped to read about others.
Kathy, I had been doing Emend with steroids until I started having some steroid psychosis, would definitely rather deal with the nausea than that!!
We tried some Phenergen with the Emend which knocked me out for 3 days. This last time we did Emend and Zofran combo, didn’t work so well. I think I will go back to the Emend and phenergen combo…sleeping for 3days is not such a bad thing!!! How long have you been doing the Gem/Cis combo? It seems to get harder each cycle for me…how about you?Lainy, thank you….I am happy and fortunate that we even found it when we did. I have always been healthy, active and very busy. It was a miracle that it was accidently discovered by an ultrasound! My children range in age from 21 – 8 years, they and my husband give me strong motivation to fight this battle. I am a strong believer in miracles!!
Gavin, thanks for responding…I am glad to be a part of this group…it is just what I needed. This is hard for me, I am not used to being tired and find myself getting frustrated that I can’t do as much as I used to. Just to fill you in a little, my husband and I were full time paramedics…both going to nursing school fulltime and being parents of 6, nothing stopped because of the cancer, except my energy level!!! It is great to be able to relate with others!!
Glad to be here……Melinda
Hi Tina,
Thank you for your kind words. Yes you are right in that it is nearly a year since my dad passed away, and I won’t lie to you, it has been a tough year. There is not a day that goes by in which I don’t think of my dad and I miss him terribly, but I guess that that is just normal and something that we all go through.
You ask me what has helped me in getting through these days. Well I guess that I would say just getting on with life. The reason that I say that is because that is what my dad would want me to do. He was a great one for getting on with life no matter what it threw at him and that is what I try and do. It doesn’t mean that I don’t think of him so much or miss him loads, I do, but I just try and get on with things as that is waht he would want me to do.
I guess that another reason I just had to get on with things is down to my mum. She has COPD and I am her carer and have been so for about 8 years. The night before my dad passed away the two of us were talking and dad made me promise that I would look after mum once he was gone. He knew that I would keep looking after mum as I had been doing so for years anyway, but he wanted to hear me say that I would keep doing so and I promised him that I would, and that is a promise that I am keeping to and will continue to do so.
Another thing that has helped me enormously has been coming here and the wonderful people here, and I think that this would help you as well. I can come here and people know how I am feeling and I know how they are feeling, just as I know how you are feeling right now and what you are going through as well. I wish that there was something else that I could say to you that would help ease your pain right now, but we know how you feel and we care.
My best wishes to you,
Gavin
Hi Melinda,
Welcome to the site. I am sorry that you had to find us all but glad that you have joined us. I hope that you will keep coming back as you will get a ton of support and help from everyone. And feel free to ask any questions and we will all help if we can.
I’m afraid I can’t help you with your question about lung mets as my dad never had them, but I’m sure others will come along soon to share their experiences with you about them, and in the meantime as Marion says, there is the search function on the site that I know will throw up past discussions about lung mets.
Looking forward to hearing more from you and please keep us up to date on how you are doing.
My best wishes to you,
Gavin
Hello, Melinda and welcome to our wonderful family. CONGRATULATIONS on already being a CC survivor, that is great news. WOW! 6 children really makes you a survivor!
Not only can you survive anything but that is 6 good reasons to keep on fighting and sounds like you are doing just that. Cannot help on the lung Mets but glad you joined us and please keep us posted.Melinda,
What medicines are you taking for the nausea? I take EMEND on chemo day and 2 days after, steriods on chemo day and 3 days after, and Kytril on the day of chem. I know everyone responds differently, but these drugs have worked great for me when none did last fall.
For me, I think EMEND is the best medicine for preventing nausea. My insurance won’t pay for it when they give me one pill at the chemo place ($275 charge), but they would pay for the prescription for the next 2-day supply of 2 pills ($20 copay) The pharmacist told me it comes in a three pack, so now I use a prescription on chemo day. All three pills are the same $20 copay.
I’m on the same Gem/Cisplatin combo that you are and will be done by Thanksgiving!
Stable is GREAT NEWS! That’s where I’m hoping to stay.
Kathy
Hello Melinda and welcome to our site. Don’t you just wish we had met under different circumstances? First and foremost congratulations on a successful resection.
Lung metastasis has been reported by several of our members. In fact, you may read up on some of their postings by using the google function, top, right hand side of page.
But, I am sure for others to chime in real soon and share some of their experiences with you.
I am happy that you have found us and am looking forward to many of your postings.
Best Wishes,
MarionHi all, I am a 42y/o mother of six, wife, and cc patient. I was diagnosed with Intrahepatic CC in December, 09. Three weeks later I had 2/3rds of my liver removed. Margins all clear, no lymph node involvement. No chemo after surgery…don’t remember it even being an option. Follow up scan in March showed spots in my lungs, biopsy confirmed the metastisis. We traveled to Mayo for second opinions and in June started Gemzar and Cisplatin. Have had two scans since starting the chemo, both scans showed no growth, my doc says we have a stable disease for now.
So far my liver is great. I am wondering if there are any others out there with cc just in the lungs and how treatment is working for them. My insurance won’t approve any other treatments but the Gem and Cis combo. I strongly dislike the week of Cisplatin, but manage to get through it. The nausea and fatique are the worst!
I am glad I found this site. This is such a rare cancer that it frustrates me to not have more answers. Thanks for sharing and my prayers are with you all!
MelindaScottsMum – Thank you for your kind words and giving me strength when you are going through the hardest part yourself! I really appreciate that.
I am so sorry your family has had to suffer so much this year – with the passing of your sister-in-law at such a young age and now to deal with your own mother’s illness.
It is surprising to be “recommended” no treatment when the cancer is not even advanced – but I guess considering your mom’s age and medical history the Oncologist doesn’t want to send your mom’s system through the ringer and chemo would most likely do that. How about natural therapies – or even meditation/visualizations? I know it seems a bit off but I find that what works best is whatever the patient believes in. When my mom thought the chemo was working she’d have a “great” day, a lot of it was mental.
You’re right that each day truly is a gift and that is all that matters- not tomorrow or next week but right now. Just being there for your dad and your mom is the best thing – and you’re already doing that. I hope you are finding time each day to take care of yourself – it’s a lot to have to caregive for both your mom and your dad.
Keep us updated with your mom – I am constantly thinking of you and your family! Just remember, anything’s possible.Ironbark – Thank you for taking the time to write a response and share your own experience. I am so sorry you are having to deal with all the ugliness that comes with this disease as a caregiver.
I know exactly what you mean by the rollercoaster of emotions – it truly is cyclical. I found that a certain emotion would hit me at certain times everyday – by 6pm I was full of hope, then it would wear a bit before bed and so on…it is truly exhausting.
My mom spent her last month in the hospital – my sisters and I rotated shifts throughout the days and nights so that she never spent a second alone – I mean every second – the nurses considered us staff because we took over everything from bed shifting to bed pan. And each day we received worse news – I know how discouraging it can be to see a disease take over – no matter how hard you fight. What made it bearable was the fact that every morning I could visit her and everyday we found many things to laugh about. Also the fact that anything is possible – we truly believed until the very last second that things could turn around because honestly sometimes they do.
You seem to have the right attitude – and I think the green ribbon is a great idea – hopefully the colour would be bearable for all! But I am willing to do whatever it takes to get this cancer some serious funding!
I hope you are taking care of yourself – keep us updated with your dad. I am thinking of you and your family.
Gavin – Your quote is infamous amongst these discussion boards – and for good reason – this really is the club no one wants to be apart of but are glad they found.
I am so sorry for the loss of your father – from what I have read, you sound like a wonderful and supportive son and person and your father was lucky to have you.
I know it hasn’t been a full year since the passing of your father- but I was wondering what you have found to be most helpful in getting through the days? It hasn’t even been two months but I feel the exact same as I did the day my mom passed.Thank you all for your kind words and taking the time to share your experiences. It does help to know I am not alone at this terrible time.
Kathy – I saw on other posts that you have surpassed 14 months – congratulations. That is truly wonderful news. Everyone’s body really does work in it’s own way and it’s so great to know that yours is responding well to treatments.
I am sorry you are so close to my mother’s age and a mother yourself, having to deal with the weight of this disease. I only fully understand it from the daughter-perspective so I won’t even begin to pretend I know how you truly feel but your positive attitude shows real strength and determination and I really admire that. I hope your kids are okay and have their own forum to cope with the emotions of everyday. I am thinking of you and your family.Tina ,
My sympathies for the recent loss of your dear mum,I am sure that she was a wonderful person and you will miss her terribly.
We recently lost my sister in law suddenly due to respiratory failure at the age of 58 years,and I am currently supporting my father to look after my 81 yrs old mother who was diagnosed in June with cholangio.
Our situation is much complicated by the fact she has also had two serious strokes.Our story is there to read under” Mum just diagnosed Ninewells”.My own mother’s cancer was not that advanced in June but her age and frailty meant that the doctors have given her no treatment other than fitting a metal stent to relieve her jaundice.I have mixed feelings about this ,but am glad she did not have to suffer the ill effects of Chemo or radiation as I understand that in many instances it has little effect on cholangio.
I think that at her age they are just going to let nature take its course,and keep her as comfortable as possible.The only thing that bothers me somewhat is not knowing how things are progressing inside her poor body, but with the disability and dependency of her condition,I think that she will be ready to go when it is time.I know that I would in her position,as her quality of life is now gone.
I hope that you will soon be in the place where your grief turns into quiet joy recalling all the happy and even funny and endearing little things that made your mother so special to you.At that point you will see and hear and even smell things that will remind you of her and be assured that she is still close by,keeping an eye on her family,but in a place where illness of the body can no longer affect her.
Sadly I fear that I will be in your position fairly soon,missing my own mum,but you just never know with this unpredictable cancer ,maybe she will surprise us all.
We just get on with the practicalities of every day and do not dwell on it ,as every day is a gift.ScottsMum.
Hi Tina,
Welcome to our club. Or as Gavin put it when I joined – welcome to the club that no-one wants to join, but is glad they found.My Dad has just been diagnosed, and we are starting the roller coaster ride of good news, bad news, worse news, optomism and poor prognosis. This is an almost daily emotional ride, and we’re hanging on for dear life.
This forum, and the wonderful people who are part of it, are an extremely important part of my coping. Sometimes you just need to know that others have experienced the same as you. It helps you to not feel so alone.
I’d never heard of cc before Dad’s diagnosis, now I feel as though I am almost an expert in everything cc. I’d rather not know, and hopefully if this horrible disease can be identified earlier for people, then someday it WILL have a better prognosis. Maybe we need a bile green day – just like the pink they use for breast cancer awareness. Clashes with my eyes, but I’d do it if it helped.
We’ll look forward to your posts Tina. I know how hard being a supportive daughter is in this situation, so see you and your sister as an inspiration to still be willing to provide support after the loss of your georgeous Mother.
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