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Recovery from pleurodesis and starting Ribociclib (amongst other things)
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Trishym
Member Posts: 6 ✭
Hello Everyone,
A bit of background
2013 i was newly diagnosed on my 39th birthday with invasive ductal carcinoma, ER + Her2 negative (Stage 2B, lumpectomy, 2/13 nodes, chemo, rads, tamoxifen) Also left my husband during treatment, for multiple reasons, a good decision.
Around my 44th birthday this year in July, 5 years later, the sneaky bastard of a thing has returned!
I was getting short of breath, and thought for a while that I lacked cardio fitness, even bought myself a skipping rope. This symptom did not improve and that little voice inside my head piped up to get this checked out. A chest xray revealed quite a lot of fluid in my right pleural cavity, almost 2 litres of fluid was drained, subsequent scans and cytology revealed bone mets to my spine, rib and sternum and adenocarcinoma (malignant pleural effusion)
2 weeks ago I had an operation by a cardio thoracic surgeon called a VATS talc pleurodesis, this is a more permanent solution for the fluid collecting in my chest cavity rather than having multiple aspirations to drain fluid that will just keep accumulating. Over 4 litres drained and a 6 night stay in hospital hooked up to a drain.
Recovery has been slow and painful from this procedure and I'm wondering if this has been the case for other people? My lung is still colllapsed, I do hope that it will re inflate eventually, leftie is doing great but righty was squished for some time.
19th Sept I'm schedule for an oopherectomy (ovaries removed to induce menopause), jeez I hope I'm match ready for the next op!
I'm sure ladies on here that have had this procedure would have mixed side effects and reactions, I guess I'm after some reassurance that I won't turn into a demon woman.
My oncologist will start me on Ribociclib with an Aromatose inhibitor. This drug has very recently been approved by the PBS, are there any ladies on this drug and are you coping well with it?
I have 2 beautiful boys aged 9 and 11, I truly hope to be around long enough to guide them through their milestones into adult men.
That's the thing that really effects me with this diagnosis, the impact on my children. We all want our mums to be around for a long time, my mother has been an amazing support to me over the years, I could't thrive as much as I have without her.
Anyway, thank you for taking the time to read my post, you chicks are amazing and I enjoy reading your posts as getting real responses to people going through the various procedures, drugs and experiences is more supportive and helpful than reading a clinical study on Dr Google.
Love and healing energy to you and your families.
Trish
A bit of background
2013 i was newly diagnosed on my 39th birthday with invasive ductal carcinoma, ER + Her2 negative (Stage 2B, lumpectomy, 2/13 nodes, chemo, rads, tamoxifen) Also left my husband during treatment, for multiple reasons, a good decision.
Around my 44th birthday this year in July, 5 years later, the sneaky bastard of a thing has returned!
I was getting short of breath, and thought for a while that I lacked cardio fitness, even bought myself a skipping rope. This symptom did not improve and that little voice inside my head piped up to get this checked out. A chest xray revealed quite a lot of fluid in my right pleural cavity, almost 2 litres of fluid was drained, subsequent scans and cytology revealed bone mets to my spine, rib and sternum and adenocarcinoma (malignant pleural effusion)
2 weeks ago I had an operation by a cardio thoracic surgeon called a VATS talc pleurodesis, this is a more permanent solution for the fluid collecting in my chest cavity rather than having multiple aspirations to drain fluid that will just keep accumulating. Over 4 litres drained and a 6 night stay in hospital hooked up to a drain.
Recovery has been slow and painful from this procedure and I'm wondering if this has been the case for other people? My lung is still colllapsed, I do hope that it will re inflate eventually, leftie is doing great but righty was squished for some time.
19th Sept I'm schedule for an oopherectomy (ovaries removed to induce menopause), jeez I hope I'm match ready for the next op!
I'm sure ladies on here that have had this procedure would have mixed side effects and reactions, I guess I'm after some reassurance that I won't turn into a demon woman.
My oncologist will start me on Ribociclib with an Aromatose inhibitor. This drug has very recently been approved by the PBS, are there any ladies on this drug and are you coping well with it?
I have 2 beautiful boys aged 9 and 11, I truly hope to be around long enough to guide them through their milestones into adult men.
That's the thing that really effects me with this diagnosis, the impact on my children. We all want our mums to be around for a long time, my mother has been an amazing support to me over the years, I could't thrive as much as I have without her.
Anyway, thank you for taking the time to read my post, you chicks are amazing and I enjoy reading your posts as getting real responses to people going through the various procedures, drugs and experiences is more supportive and helpful than reading a clinical study on Dr Google.
Love and healing energy to you and your families.
Trish
Tagged:
2
Comments
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hi @Trishym
sorry that the bastard has come back I am sure you will get responses from others in same situation.1 -
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Biggest love Trish and sending that healing energy right back at you. K
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Hi @Trishym,
Well , you have been through it all!, welcome to our corner of the world, although I know its the last place you want to be,I am a bit older than you, in fact I could be your mum, my son is 45, my granddaughter 17, work out the math, I was a young mum,I had a surgical induced menopause at 29, so believe me I can understand{early ovarian cancer}, we are all unique and individual and the drugs have got a lot better since I went through it,so it will really be a matter of waiting and seeing how your body reacts! my own father had the same procedure that you did for your pleural effusion and yes its not nice and very uncomfortable,you are going to be on one of the best combos around after your operation, I am on a different chemo called xeloda, I too have mets to my spine and liver, it just sucks!!
There are a lot of support services around, its a matter of navigating the system, so pleased that you have your mum to help you, do you have any other support, a McGrath Breast Care Nurse, a counsellor/pyschologist? I would imagine the school
where your kids go have been very supportive, the nurses here at bcna are fantastic so if you want a chat there is a lot of info that they can give you, also for us ABC{Advanced Breast Cancer} girls they have a fantastic service in place, they have the services of a counsellor by the name of Dr.Carrie Lethborg, she will speak to you in the privacy of your home via telephone link up, google her name and you will find out about her, then just ring the 1800 number and ask to make an appointment, have you spoken at all with the cancer council, they have a lot in place for us as well, I dont want to get too personal, but I would assume that you are not working at the moment,if not are you aware of the services in place that you can access, there is a foundation called the otis foundation, they have holiday homes throughout Australia, available, free of charge for us, just a thought for after your next surgery, after you have recuperated you might like a holiday, I know there are other organisations in place for younger mums as well, but as an old chooky,will leave that up to the younger mums to help you with,I dont want to bombard you with information over load at this point, you have enough to think about,You, can do this!!, one step, one day at a time,we are always here to help and support you.
wendy554 -
Hi Trishym
My wife was diagnosed with liver Mets last September. She was recently placed on Ribociclib, after two different chemos became ineffective. She is now on her second cycle of Ribociclib, and the difference is amazing. She is back at work part time, and getting out and about a lot more. Hoping the Ribociclib is doing the trick, because the side effect profile is nothing compared with IV chemo.3 -
Hi @Trishym,
Well , you have been through it all!, welcome to our corner of the world, although I know its the last place you want to be,I am a bit older than you, in fact I could be your mum, my son is 45, my granddaughter 17, work out the math, I was a young mum,I had a surgical induced menopause at 29, so believe me I can understand{early ovarian cancer}, we are all unique and individual and the drugs have got a lot better since I went through it,so it will really be a matter of waiting and seeing how your body reacts! my own father had the same procedure that you did for your pleural effusion and yes its not nice and very uncomfortable,you are going to be on one of the best combos around after your operation, I am on a different chemo called xeloda, I too have mets to my spine and liver, it just sucks!! are you er/pr positive or somethin1 -
oops, sorry readers, pressed the wrong button!!!
wendy550 -
Hi Trishym
rotten sod of a thing. I had a close friend who had the same op as you and it was really painful it was just time and rest that got her through.
I had an oophrectomy seven years ago. The op was fine but the hormone withdrawal was a bit tough. My doctor put me on a low dose of Effexor which really made a difference with the hot flushes etc. It also helped that it is an antidepressant which helped me get through the dark days. But that is just me we are all different so speak to your treatment team.
Im sending you a cyber hug and all the best with your treatment.2 -
Hi @Trishym I can’t contribute as my situation is different but I just wanted to send u a huge cyber hug xoxo0
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Hi @Trishym. Well, that all sounds a bit shit for you! I'm sorry that you are having to deal with all this, but you sound positive, and I reckon that's a good space to be in. I have mets to my spine and rib (diagnosed in may, almost exactly five years from my initial bc diagnosis). I have not had the lung issue and treatment you're dealing with, but I am on my 2nd round of leterozole/ribociclib treatment, and I feel fit and well, if a little fatigued at times. I went into chemical menopause with chemo during my initial treatment, aged 45, and never resumed menstruation, so avoided the oophorectomy. At first, the sudden menopause symptoms were intense, but they did settle down and eventually most of them wore off. My children are a little older than yours, but they are coping brilliantly, and I feel certain that I will be around to help them with their own babies in a decade or two. I hope you see some welcome recovery from this procedure. xx1
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Thank you all for responding and your encouraging words, it really helps and I'm pleased to hear about those who are coping well with Ribociclib and your information on support networks.
I saw my cardio thoracic surgeon today, he was happy with my recovery from the Pleurodesis procedure and told me it takes 6 to 8 weeks and my lung could take 3 months to gain normal function, so that was reassuring and he was happy that I'm ok to go ahead with the oopherectomy next week.
I was working full time but I'll be reducing to 3 days a week when I have recovered from both operations. Thought I'd be ok to do a couple of days this week but nah, still feel like i've been kicked by horse but I'll get there soon enough.
I believe we have had more advances in the last 5 years than the previous 40 years for cancer research with more targeted immunotherapy. My partner has been in Taiwan this week for a medi tech conference and has witnessed the future of medicine and cancer detection and treatment, i'm sure we will eventually outsmart this disease one day.
It is a shitty club to be part of but its one that has a lot of love, support and understanding to give which makes me feel honoured.
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