Side effects — OCA Connect Online Community

Feel isolated and uncertain

Suet — Tue, 29 Oct 2019 23:23:24 +0000

Hello my name is sue. I am 56. I Was diagnosed with stage 4 metastatic ovarian cancer in July and had 10 hour surgery lower and upper abdomen. 3 weeks hospital, infected collections and then lung drain. Big zipper scar but my surgeon was fantastic, a marvellous woman.

Now half way through 18 week chemo and loathing what it does to my body, bowel inflammation, hair loss, stomach cramping. All pervasive e haustion. Feel very out of control and not much continuity with oncologist so far due to holidays so nobody really has oversight of my case. I need to get that back on track but I also need to reach out to fellow sufferers to see if they too feel this powerlessness and confusion. Am on carboplatin and taxol.

Any advice on Sydney groups or how one van sit down with someone and have a decent conversation would be very much appreciated.

Thank you

Looking for fellow women taking Olaparib.

J_Bird — Sun, 15 Nov 2020 23:04:56 +0000

Hello everyone,

I have had a recent diagnosis of a Somatic Braca 1 mutation. I started on Olaparib last week and have been asked to stay on it for two years. I am looking for other women who are on the medication too. I would love to hear how long you have been on it, any initial reactions/symptoms and also any long term changes to these reactions/symptoms.

I have 16 questions ready for my oncologist regarding the drug which I'm hoping she will be able to answer. ;-) So far, my GP, pharmacist and gynaecologist-onc surgeon have either never had anyone on it or are only mildly familiar with it. As I live in Gippsland, Victoria, I think I may be the only patient they have that is on this medication.

Looking forward to hearing from you.....

Jenn

carboplatin/ Paclitaxel

churchmouse — Sun, 03 Feb 2019 21:20:00 +0000

Hi everyone, I have read on some blogs from overseas about people who have developed some 'arthritis' style symptoms after having their chemo. After 6 treatments I have developed pain in my joints... it started as a small pain in my right hand thumb joint, then for ease of explanation has increased and progressed to joints from there - almost like following my circulatory system. (Right shoulder, left arm, left hip, feet and right hip) Also - the larger the joint, the more intense the pain AND has continued to develop in the months after my chemo has finished. (I am now 4 1/2months on from my last chemo treatment). The more I move the less intense it is, so, if I am exercising or working, the pain seems to be much less noticeable, but for example, when I sit, sleep, watch a move- my joints seem to set and it takes quite a while to get moving albeit with quite painful joints.. has anyone else experienced this? Claire

Exercise Physiologist + Acupuncture

Sirin — Thu, 01 Dec 2016 15:30:26 +0000

Hi all,

After my chemo I had severe and chronic pain. I was finding it difficult to walk, get up from my seat or the floor etc. I have recently started acupuncture and am working with an exercise physiologist to help improve my strength and stamina. It's only been a few weeks and I am already noticing a change for the better in my symptoms.

First Chemo Today

Gregry — Fri, 15 Mar 2019 20:22:48 +0000

Hi there - I am Angela

Diagnosed 12 March - First chemo 15 March

Feeling ok so far

Now that I have started my recovery journey I am ready to start finding out more

There must be so much to know

Hi there

taniak — Sun, 07 Apr 2019 15:51:12 +0000

Hi all. Seeking a bit of advice. Caring for my mum - recurring stage 4 ovarian cancer. Currently on oral chemo to buy more time. But the side effects are giving her no quality of life. Diarrhoea; not wanting to eat, blood transfusions, weak and tired. Not sure what to do.

Low fibre diet after bowel obstruction

Maureen — Sat, 23 Mar 2019 11:49:50 +0000

hi I was diagnosed stage 4 May 2018 have had chemo,debulking surgery,4 avastan now on Calyex. Last month I had bowel obstruction and collapsed left lung..surgery was not option however after resting bowel it righted itself🙂.Discharged from hospital was told to always now follow low fibre diet My Question is any one else been given this diet.?. The plural cavity was drained had over 2 litres fluid and sealed all good at present cheers Maureen

Hot flushes /flashes tips ?

purplewillow — Wed, 05 Sep 2018 13:40:28 +0000

After My hysterectomy plus other procedures debulking +removal of lymph nodes surgery the hot flushes hit and they hit hard ,problems with sleeping and I've had two medications that didn't work,one made me very sick , I'm not really liking that I have to take more tablets as the Tamoxifen knocks me and makes me tired but I just hope it's killing the cancer , My doctor has made me an appointment for the Menopause clinic ,so I'm waiting for that ,My 18 year daughter is so beautiful she knows I sweat so she made me a hankie to wipe my hands ,I would love to know some tips to keep cool thanks ....from Kylie.

what a year !

purplewillow — Wed, 05 Sep 2018 13:05:57 +0000

Hi My name is Kylie ,I’m 43 ,married 21 years ,I have three children ages 21,18,11. and I have Ovarian Cancer (serous borderline tumour) ,I was diagnosed in APRIL 2018 of this year ,at first they thought it was cervical Cancer : My body was telling me signs ,I just wasn’t listening as I suffered with a scar tissue mass after my last c-section and that caused me pain at times,but then came the huge bloating of my tummy I looked pregnant ,and when I bent down I found it hard to breathe ,so I went to the doctors and even though I told them that the bloating isn’t my weight ,They didn’t think it was serious they gave me a slip for an ultrasound but I couldn’t wait over the weekend ,so My Husband and I went to the hospital ,Really shorten the story : ,after ultrasound and blood ,urine tests CT-scan MRI scan ,A few days later surgery full hysterectomy ,removal of lymph nodes debulking + tumour under belly button ,I still have cancer they couldn’t get the rest,I have an odd type of Cancer ,now it’s low grade and fighting it with Tamoxifen and trying to fix these hot flushes.

Hi my name is maureen and I am due to have my 3rd chemo in 2 days hopefully to b

Maureen — Mon, 25 Jun 2018 16:20:29 +0000

having my 3rrd chemo in two days time followed by scan and hopefully debunking surgery in July

Starting chemo again tomorrow

DeeDee — Tue, 13 Mar 2018 12:44:50 +0000

Hi all,

Im starting chemo again tomorrow as its been 5 weeks since I had surgery. Hopefully I wont have to many side effects this time round. My hair had started to grow back so Im hoping it wont fall out again, not much I can do about it if it does. But I have been using a shampoo to stop hair fall so who knows. Ill try anything once or twice. Not looking forward to stating chemo but looking forward to seeing all the oncology nurses they do make the day much more pleasant. My ca 125 level has come down to 20 (when I was first diagnosed it was over 2000) so Im hoping that will drop more. Doc was pleased with results because I have responded really well to everything so far. Anyway on a different note I would love to hear where everyone is from and how everyone is doing. Ive noticed a lot of people havent posted anything for a long time and Im curious as to how they are going. Maybe one day we can all meet up for a cuppa. Anyway Ill let you all know how I go With chemo. Dionne

Hi my name is Anna

Anna — Mon, 17 Apr 2017 18:52:31 +0000

I just wanted to chat with anyone who has been on or is on Olaparib (Lynparza ). I have just started a week ago and have been so fatigued/occassional nausea i can't get out of bed. Anyone else have the same problem? I've seen some posts from Helen thought we could have a chat

Helen

HealthyNow — Sun, 04 Feb 2018 18:56:32 +0000

Helen - what is your treatment on Friday? I will call Chi-Hau Chen tomorrow to find out if my Feb 10th chemo is 1 day or 5 days. Will keep you posted. So tired. Sandra

new diagnosis and Hair loss question

mary — Fri, 20 Oct 2017 10:16:23 +0000

Hi. Im Mary. I was diagnosed 2 weeks ago. stage 4 ovarian cancer. I had my first chemo last week. Had problems with painful constipation and headaches, tiredness of course, but not too bad.

Second chemo yesterday: had a reaction which was scary, and they topped me with antihistamine. I slept a lot. Feel pretty good today, thanks to my rediscovery of prune juice!

I am wondering if anyone can give me an idea when I might start losing my hair. I want to go to a Look Good Feel Better workshop, but think it might have more value when this is happening. I have long white hair which has always been my identifier is you know what I mean. Its been this colour since my 30's.

What have others done?

looking forward to connecting with others.

hi my name is claire

clairebear — Fri, 10 Nov 2017 11:25:13 +0000

Hi claire here. Im 55 and diagnosed with Ovarian Cancer stage 4 in August this year. Really no signs or symptoms before hand that i had Ov. We celebrated my sons 21st in July after that started having niggling pains constipation and then my tummy blew up .I felt 9 months preggy. That was the worst prior chemo plus vomiting ..not eating .lost so much weight. Anyway chemo started and has now ceased due to affects on my white cells. So now in limbo waiting to hear from doctors.

To Meredith IP chemo

HealthyNow — Fri, 14 Jul 2017 17:59:43 +0000

Hey Meredith and everyone else - just dropping in to say hi - I could have had IP during my surgery - if you have a port you are not having IP - IP is a special machine the surgeons use to put probes in your abdomen and liver and they run hot heated - to some super hot temp - chemo inside of you - risks - can whack your kidneys - benefits - better survival. I did not have it b/c they did not tell me until the night b4 my surgery that it was 6,000 us bucks. not covered by my national health insurance. i am chemo free for july but i am so TIRED - i had 3 12 hour days with TONS of walking and other stress - I wonder if it was just too much - i am lying down now - had a temp of 38.9 C yesterday - luckily one 400 mg ibprofen broke the temp. there is another kind of ip they can do post surgery - but again they run tubes into the abodomen and pump in super hot chemo. WRITE - healthy now.

Bowel movements :-)

HealthyNow — Tue, 04 Jul 2017 15:01:33 +0000

Anyone had this experience? Yesterday I got up and had a bowel movement then I proceeded to have 6 more - all in good form. I bicycle, walk, shop, cook, feel good, do stuff - 5 rounds of paclitaxel/carboplatin; 5 rounds of lipodox/carboplatin; surgery 2/17; CA125 37 June 8 and 59 June 23. Thanks community! Healthy Now.

Hi I'm Lisa

LisaR — Sun, 01 Jan 2017 17:11:23 +0000

Hi all, I'm Lisa. 53, single, living with my two cats. I work full time as an Occupational Therapist. Though currently on sick and annual Leave!

I have just signed up to this to try and connect with others. I was diagnosed with Stage 3 Clear Cell Ovarian Cancer in October following full hysterectomy. I have just completed my second Chemotherapy treatment. The first didn't go so well as I had a major allergic reaction to the Paclitaxel. The second time I also had the same reaction, however they dosed me up on drugs which enabled me to have the full infusion. I just have a question and that is if anyone had the side effects of the tingling feet and hands along with muscle pain and fatigue and how you managed it. I am feeling fairly debilitated by it and wondering if it ever ends. Thanks and look forward to connecting with others. And wishing us all a Happy 2017 and healthier one too!

Finger & Toe Nails

Nightowl — Wed, 04 Jan 2017 17:14:49 +0000

Hello. I've been having Chemo treatment (Taxol & Carboplatin) which has been stopped 2 weeks early because of the impact it's having on my finger & toe nails. Tingling in the fingers & feet has been controlled by Erica tablets, but not before the nails started to become sore. Mainly in the fingers, especially the middle ones, the nails have lifted away from the nail bed, pointing up wards, with up to about 3mm from normal. They are painful if knocked and it's difficult to use my hands - like dry myself! One nail is looking like it will lift away completely. So my questions are: has any one else experienced this? and, how did you cope, as I expect it will take months for the nails to grow out? I have not been able to find elsewhere, any info on this particular subject. Hope someone can help. Thanks.

Breathlessness

Sara — Sun, 15 Jan 2017 01:20:58 +0000

Does anyone else have a problem generally with breathlessness? In my case it is not actually linked to the levels of oxygen in the blood which are 99-100%. It comes and goes and gets worse with activities like walking upstairs and gardening. I have been having chemo (carbo/gemcitabine) again for a re-currence and the oncology nurses said it was common with women undergoing chemo.

Take care,

Sara

Hi Guys,

chrishayward — Sat, 26 Nov 2016 17:15:54 +0000

I'm Chris and was diagnosed with stage 3c ovarian cancer in August 2013 at aged 58. After my operation and then 18 weeks of chemo. I tolerated the chemo for 9 weeks then the Taxol left me needing a few litres of blood. After that I had a port put in and felt a lot better having the chemo through the port as I didn't have a lot of veins left. The only thing that really got me down was losing my hair, I would look in the mirror and wonder who this woman was...as you all know we are never the same person after this experience or journey as they call it. I have been well, after the treatment finished I did have a few problems with peripheral neuropathy in my legs and feet, a little in my hands still need to press really hard on key pads etc. Did anyone else notice if they had osteoarthritis that it got worse? I'm having my three yearly bloods done and seeing the gynaecologist surgeon this week... I feel happy and well: still get tired and the mind does forget things I still claim Chemo Brian and life is a bit slower these days.

more information

RobynLeslie — Sat, 22 Oct 2016 18:03:20 +0000

OOps I forgot to say go to Volunteer services on the ground floor near the Auxillary shop- They have a buzzer on the left side of door. They told me they give out 10,00 items per year and when I said I didn't know they said to spread the word.

Dropping by to say Hi

Mazza — Fri, 07 Oct 2016 07:58:29 +0000

I am 55 yrs old with two grown up sons and three grandsons and a wonderful hubby who is taking care of me and has been taking care of me for the last 16mths. I was diagnosed stage 4 last yr in july I had no symptoms until my tummy started filling up with fluid and by 3 weeks I looked 8 mths pregnant and was pretty uncomfortable, had a ten day stay in hospital where they drained me and found out the problem. Was pretty devastated at diagnosis and had to wrap the head around it, didn't even feel sick to be honest except for the swollen tummy. Have had 6 doses of chemo to knock the fluid down and the cancer, the fluid had gotten into my lungs so had to treat them too, then a hysterectomy and debulking in January of this year and now on more chemo, not sure what the out come is going to be but am trying hard to stay positive and stay alive, I actually look really good and other than the chemo side effects am feeling not too bad, tummy is a bit swollen at the moment, was on carboplatin but kept having allergic reactions so had to change to cisplatin last chemo dose man strong stuff, have another dose due next week again the 3 weeks come around so quickly.

Hi I am Vicki born 31/03/59 at 12.10 am. I was diagnosed stage 4 ovarian cancer

Vicki1959 — Mon, 05 Sep 2016 03:06:47 +0000

To date I have not had a reoccurrence and am on a drug trial of Olaparib. It is going really well except I suffer a lot of fatigue. This is managed by exercise and rest.

Hello

chezza — Tue, 30 Aug 2016 06:27:36 +0000

hi everyone, I was diagnosed in 2013 stage 4, finished treatment Oct 2013 and reoccurrence in June 2014 and started clinical trial at RMH on Orlaprib Sept 2014.

just wondering if anyone else is on this drug if so what side effects have you had, I've had lowered potassium and magnesium levels, and for the past year my red blood cells have been increasing in size.

also I have been diagnosed with the PALB2 gene any one else also got this gene?

warm regards,

cheryl