Hi Ladies ,went for my check up last Thursday.I had been having pains ,aches,indigestion and just intestinal problems.Had scan last Friday week.Was expecting the Onc to say,Sorry not working disease progressed.What I got from Onc was,I'm more surprised than you but your scan was normal,NED and CA 125 14 all other bloods excellent.
Now you would think I'd be jumping for joy,but I wasn't.Because I guess since the start of this journey eventhough you think your heading down the highway sometime or other ,there's a U turn and you find your self back where you started.
Something is causing the pains so to be sure to be sure another scan is ordered for August so then I might be able to relax.It seems Olaparib is doing what it's supposed to do.xxx
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annieH1
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Hi Annie, this is brilliant news. I know that doesnt rule out your symptoms. But hopefully you got something like Maalox to alleviate the symptoms. Would the indigestion be caused by the Tumeric as I found it irritates my tummy a lot. I got heartburn etc. I am back this week on the Fosavance for my bones so watching to see if this indigestion returns. The gastro told me to cut out the spices and spicy food as in tumeric and ginger. The ginger goes into the juicer so I can tolerate that. Also I find that while lemon is also good for you it doesnt agree with me.
Thanks Suzuki,yes I cut out spicy food recently as I found it no longer agreed with me.I forgot to tell you.I wrote to CEO CUH but got no reply so sent the email to the chair of acute hospital.Low and behold I got a 3 page response from CEO of CUH.It seems they are renovating the radiotherapy unit and turning it into an ambulatory unit for those having complications from Chemo etc.
Woo hoo, well that is just fantastic. As our gynae Nurse said to me chipping away something will give. Every chance I get I mention this Oncology area be it on social media. Also a certain lady praised CUH on Irish times thread on fb said it was run fantastically. I suspected the name was familiar as in similar to a CEO so I totally disagreed with her. I said the staff as in nursing and medical did a great job with the little they had but the hospital itself was badly managed. Not even a chair available in the Oncology Ward for doctors to write their reports. One in fact came into my friend and sat by her bedside completing his charts because there was no chair for him to sit at the Nurses station. Also the Consultants and nurses are overworked etc. You definitely got the right approach when you got an answer of that length.
Hi there, I hope you don't mind me asking but are you Brca positive and is the the avenue by which you accessed the drug? My mother is negative and having very poor response to conventional treatment so I am trying to see if PARP inhibitors could be am option for her.
Thank you and I wish you all the very best in treating your disease
Hi BvDz yes I'm BRCA positive.It was one of the criteria for getting the Parp Inhib.I think it would be a good idea if your mum looked into trials for neg BRCA .x
Thanks Annie, i thought as much, I am delighted for you that is is being effective. I have looked into the trials for neg BRCA but as she is platinum resistant and has had avastin these rule her out I will keep looking, thank you x
AnnieH1, I understand how you are feeling. I am on Olaparib in a trial. I am BRCA negative. I am very weak, hurt everywhere from time to time, and I'm always expecting to find my 125 has gone up and that the Olaparib has stopped working. To my good surprise, each time I find my 125 has gone down, and my cancer has improved. I assume Olaparib is helping but hard on the body. Just glad to find something that's helping. I am having a hard time being excited because this is such a roller coaster but I try to count my blessings everyday. One day at a time. I am blessed. Happy for you that it's working.
Thanks Bluehen,yes a roller coaster is right😀 I guess it's all part of the journey we're on.Im so glad it's working for you,I know it's hard on the body,I had to have my dosage reduced last year as I kept being anemic.xx
AnnieH1 Since getting your dosage reduced, how are you feeling? How long have you had a reduced dosage? My oncologist suggested I could get my dosage reduced but said I can't go back to the dose I was taking if I do. I'm a little afraid to do this as so far this is working . I would like to have more energy so I could resume a more active life. I do feel blessed to find something that working and I'm afraid to change anything. Have you continued to improve on a lower dose?
Hi Bluehen,when I was on the high dose for 3 months I became anemic and it continued until May.I needed 7 pints of blood in 3 months,my heart was being affected.Since the dosage was reduced a year ago,my cancer has improved and my CA125 has stayed the same depending on the day,it never got higher than 13.There is another lady that had her dose reduced even further than mine and we're both doing well.I think they're going by your weight now to see how's much the body can take.
AnnieH1 May I ask how much you are taking? I am taking 2 150 mg twice a day. I went off it for a week and I was so much better but went right back on it because it seems to be working. My choice now is whether to take a smaller dose.
Hi Blue hen I'm taking 4 tablets in the morning and four in the evening.I was on 8 tablets twice daily.Another lady I know is on 2 tablets twice a day and she's doing brilliantly also.x
It would depend on how many mg. Some women are on capsules and some of us are on pills. Some are of different strengths. Mine are 150 mg. Some ladies are taking 50mg capsules and some 100 mg tablets. I'm not sure if there are other choices.
Wonderful news. Soak it in. Take a deep breath. Accept it as fact. You my dear are clear. That's what I am trying to do as well. All the aches and pains must be from treatment. Not the cancer. 💕💕💕
I am happy that Olaparib helps. I am on it since 23rd of April, so only 3 weeks. I am brca1 positive, huge family history. I was diagnosed in march 2015, stage IIIc, debulking 10 hours surgery, 6x carbo/taxol. Clear for 12 months and back again September 2016. Finished 5x carbo/caelyx, started Olaparib 7 weeks after the last dose of chemo. I haven't felt well after second line chemo. Still bloated, lower back pain, stomach pain. On Olaparib I even feel worse. Had to stop juicing and veg/fruit diet as my stomach couldn't take it. Of course, I still eat very healthy but not the way I wish to. I couldn't take a full dose of Olaparib (800mg p/d). I am on 600mg (6 tablets in the morning and 6 in the evening). Extremally tired, pain under my ribs, above the belly button. Hope that's just sides effect of Olaparib, otherwise, I think all the time that something is not right and cancer is still there...
I got Olaparib on my 39th birthday... This is my bday present - must work
Hi Zaneta,yes all those symptoms your getting are side effects from the drug,I still get them.Your system is also more open to urine and lung infections,especially at the start of treatment.Im on a reduced dose of 400mg since May 2016 ,I started the drug in Jan 2016.I find chewing gum helps with the sick feeling.xx
Hi Zaneta,yes I get the pain in the lower rib area,abdomen,groin and between the shoulder blades. There's a lot of information on Olaparib on the Mayo Clinic site as they have been giving it to women for 3 years or more so they have a better understanding of the side effects.I also get very constipated.
I hope that's what it is. Today I am very scaried as pain is quite severe. All left side from shoulder to hip plus all front belly. Ive started to think that might I be kidney infection I or something but I don't think so.
Cant wait to see doctor on wednesday.
It's so strange the side effects can be so different for everyone. Kathy, katmal on ovacome has diarrhoea. I actually had problems with constipatios before now I go to toilet twice a day.
I will have a read now on mayo clinic web, thank you for that.
Have a nice evening and thank you again for your message,
Hi Anne, sorry for the delay in replying to your wonderful news but I had a precedure done on both hands last Friday which left me helpless. Please enjoy your news and hopefully your pains have eased.. Looking forward to more of your Failte Ireland reports as you keep us all updated about this beautiful land we live in but only you can describe it with so much passion. Take care. Kittie
Oh Kittie,I hope your feeling better by now.Ive been keeping a low profile as have a bugger of chest infection that I can't shake so asked my go to have letter ready so I can go for chest X-ray Monday.Xx
Hi annie
This is a great news ! And I must admit, I'm also thinking of myself as my consultant is starting me on Olaparib in two weeks time, as Topotecan wasn't effective on this my 3rd recurrence and disease has progressed.
I know who you feel about the U turn. I went for results of my scan yesterday with a CA125 of 715 and pain and bloating in abdomen, terrified of being told that the disease has spread to liver or bowel, and I was so relieved to hear it hadn't , I only had more tumours in my abdomen and a mass outside my liver that I felt happy even though my disease has progressed!!
Do you know how long you will be kept on Olaparib? I think my consultant said I'd have it for 6 months, but I'm not sure.........
Hi Juliet,good news that the buggers didn't holiday in bowel or liver! I'm on Olaparib since Jan 2016,the dosage was reduced in May 2016 as I was having to many side effects.Its worked on the reduced dosage .I'll be on it until my disease progresses or my body becomes toxic ,which hopefully won't be for a long time xx
Can I ask were you in remission when you were prescribed Olaparib? I have active cancer in peritonium and CA125 is at 1636 since last Thursday (22/6), and from what I can see on the forum, ladies on Olaparib were in remission when diagnosed.
That's wonderful news! I'm not surprised, you're looking so well.
I'm only getting back now as I was in hospital for a few days having a stent put in from my kidney to my bladder to relieve pressure on my kidney. I start back on Carboplatin next week.
Thanks Cathanne.You are looking great yourself but that's the thing about this disease.At least you have a plan of action now.Carbo on its own isn't too bad to deal with,although I got a chronic itch when I was on it so had to have antihistamine.I hope your not too uncomfortable with the stent.xxx
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I will keep looking, thank you x
Me and Ipads!!
Brain in Overdrive
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