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Hi, just wondering if anyone has had to reduce their dose of Crizotinib (Xalkori). I was taking 250mg twice a day for 9 months and my heart rate plummetted all of a sudden. I had to come off the drug for almost 3 weeks and then go back on a reduced dose of 200mg twice a day. I am wondering if anyone else has any experience with this and how it worked. Thank you

My mum was diagnosed with stage 4 lung cancer yesterday and this news has been devastating our whole world fell apart. I'm a only child just me mum and dad and I need advice help to learn how to cope stay strong. Mum is so so strong I'm so proud of her I'm the one breaking I'm so so terrified of losing g my mum. If anyone is experiencing something similar I would love to hear give me a little hope. Vivinne from Mayo

Hi, I am trying to connect with someone who had prophylactic breast surgery please as I am scheduled for surgery very soon. The Consultant and nurses are fantastic but would love to learn about the experience from someone who has gone through it. Many thanks!

Hi All, I was hoping I would get some advise or if anyone was in a similar situation. My mum has stage 4 lung, liver and bone cancer the diagnosis is terminal. The last few weeks mum had a very sever sore right hand and there were 2 patches purple in color on her palm. We went to our GP who put mum on antibiotics and said it was a infection, her nail was also very dark brown in color we put this down to minor infection from the sugar test been taken. On Saturday her hand was very sore I brought mum to West doc and its shingles :(:( the infection is gone past viral infection and she was increased her dose of lyrca to help with the pain. Is shingles common with cancer has anyone been in a similar position. I have rang the corrib ward in UHG for an update as mum is due her cycle of chemo this week and its highly likely this will be postponed now. regards, Vivinne

I recently went through a very worrying time. I noticed an enlargement in my right testicle but taught I was imagining it and let it be. But after a couple of months it was getting larger. I had no pain or anything. I decided to see my GP and then had ultrasound followed by surgery and its gone! I'm now on 1 cylinder but I have gotten rid of the growth in me but will be getting CT's over the nxt 5 years to ensure its staying gone. I got it very early and acted on it. No symptons. No pain. Please guys keep a check on the equipment and dont ignore any changes down below!

Hi, I was hoping that someone may be able to guide me with the following query please? My husband was diagnosed with cholangiocarcinoma last January. He was admitted to hospital literally with no warning signs and spent the best part of 8 months in hospital between chemo, surgery & complications. I was pregnant at the time & had our fourth child in the middle of it all. I have four children now, 7,5,3 &1. We all did our best to get through it at the time and things seemed to be going well. Three months ago, my husband got sick, again very suddenly, and was admitted to hospital due to complications from surgery and he was an inpatient for the last three Months. This time around it has been a lot harder on us all as the kids are older etc. I feel like we all need some help adjusting to our new lives, in particular the kids as the suddenness & uncertainty of our future seems to be having effects on us all. Where do I go for help for us? What options are available for children of their ages? Many thanks for any replies.

Hello Everyone, First time using a forum here so please bare with me. Just a small bit of background first. I am currently 35yrs of age and still in the throws of side effects, complications, surgeries etc. Especially 4 years post diagnosis. I was diagnosed with left breast cancer in March 2014. Unfortunately this was just 3 weeks after my mum passed away from secondary cancer. I started immediate chemo. Double mastectomy was delayed by 6 months due to bi-lateral near fatal PE’s. Whilst waiting for surgery, I tested positive for the BRCA 2 gene mutation hence the decision to have the double mastectomy. I had a lot of discussions with different doctors on whether I should have my ovaries removed at such a young age to prevent ovarian cancer. All of my mums sisters and first cousins had had cancer at this stage, I was first in the family to be diagnosed so young. My oncologist advised against it for a number of reasons, 1. I had not yet had children, 2. The younger you are, the more horrific the menopause symptoms are, particularly as you don’t enter menopause naturally. We tried to compromise around age. He said 40 was best but at a push he would agree to 35. Post chemo, double mastectomy, radiation therapy I was put on tamoxifen. I received pelvic ultrasounds every 3 months to monitor my ovaries. This scans kept showing a thickening in the lining of my womb and on a few occasions it showed blood and free fluid. I was actually diagnosed with ovarian cancer at one stage to be told three days later it was a wrong diagnosis. Each time I had to travel to another hospital to have further investigations. We came to the realisation that it was most likely the tamoxifen causing the thickening of the womb. However there was still a real concern there that it could turn more sinister. Especially after I had a large benign tumour removed from my pancreas (another risk of BRCA 2). To cut a very very long story short, at age 34, I had my ovaries removed in November 2017. Just two days post surgery I felt like I had been hit by a train and thrown into a lake of sweat. Every day has been an absolute nightmare and really makes me ponder if I am able to keep going. I met with a new oncologist 2 months after my ovarian-surgery(my other one had since retired). The oncologist took me off tamoxifen and put me on Letrozole stating that the removal of the ovaries meant I didn’t need tamoxifen anymore. I asked her what could I take that would help these debilitating symptoms the menopause was throwing my way. She advised me that all that was safe to take was evening primrose oil. When I asked how long would it take before it started working, she said 3 months. I just broke down there and then, too tired of being too strong for too long. I had had a discussion about my symptoms with my GP the week before and I understood at that time that it was not safe to have HRT so I didn’t even broach the subject. She decided to phone my GP and together they both came up with a tablet named Dixarit. I think it is primarily used for migraine but does something with the blood to lessen hot flushes. Anyways, just 3 weeks after starting Dixarit I noticed a slight decrease on the severity of the hot flushes. But it did not reduce the frequency etc. The letrozole has since caused the severe pain and swelling in almost every joint in my body. My hands, my fingers, my thumbs, my hips, my knees, my ankles and every single bone in my feet. Getting up out of bed every morning is a real real challenge. I have been discussing this with my oncology nurse over the past couple of months. We were suspicious it was the Letrozole causing this and she decided it was time for me to see the oncologist again. But this time she told me my original oncologist was back doing locum for a couple of months and would I like to see him? I thought ‘hell yeah, this man saved my life’. It was the best day of my life in years!! The oncologist was able to tell me that the swelling and pain is a condition called Tenosynovitis. I had already stopped taking the Letrozole 6 weeks prior to this appointment, the symptoms had not yet lessened because I had not had any treatment. He has put me on a one month course of steroids and oh my god, 3 days in, my ankles have a normal size again and I can actually stand without holding onto things. My little doggies wag their tails and run to the door because they’re able to go for a walk again for the first time in months. So during the consult with my original oncologist, he told me that I could in fact have HRT now because all my risks have been taken away. And if I really wanted it, he would prescribe it. I have no breasts and no ovaries so he more or less said the cancer cannot come back there. I asked about my pancreas and he advised that it was not driven my oestrogen and I was not at risk by taking HRT. I am pondering why the new oncologist did not suggest this the day I broke down in her office. I was an absolute mess. I have yet to make a decision yet on the information I have been given. Has anyone here had any experience with BRCA genes, menopause and HRT? anyone taken HRT surrounding similar circumstances and had an improved quality of life?

Hello. My husband has HCC liver cancer and one round of TACE therapy has been unsuccessful - the cancer has progressed. His Dr is suggesting Radioembolization - has anyone had this treatment done? Thank you.

Hi, I’m new here 2 years ago my mother was diagnosed with with suspected cancer at the time she’d been in hospital & nursing homes for 6 months following a car accident she opted not to have treatment & to discharge herself. She had no symptoms other than her tummy being very swollen & pain in her lower back, until 4 weeks ago she was great. Suddenly she got unwell and was diagnosed with very high blood pressure. Over the following weeks she was treated for a UTI & was very unwell not eating getting up. The doctor put me in contact with the palliative care team. On Wednesday the breathing was raspy her body cold & she was very unresponsive she’d barley eaten or drank in 4 days. The palliative team put her on steroids & a patch. On Friday she was awake alert and totally back to her old self although a little high. Is this normal I’m scared that I’m getting false hope thinking she’s going to get a few extra months. When in fact the steroids will stop next week & she will go down help again. I’m my mums sole care provider & I’ve no other family. I lost my dad to cancer in March following only 4 weeks of illness. I’m worried I’m holding on to false hope & if it’s only the steroids I’ll be devastated when they stop

Hi all I'm new here and not sure if I should even be on here! But I am worried I might have ovarian cancer. I'm hoping not of course, but in case I am diagnosed with it, I'm trying to be mentally prepared at least. Long story short, I got mirena coil fitted in last year for my heavy periods and for contraception, but coil actually made things worse. Way more bleeding etc. Had u/s which showed a simple cyst on left ovary. Had follow up u/s to check on cyst after removal of coil not working, cyst still there but changed shape. Also uterus peppered with fibroids and something inside my left ovary. Got referral to see private gynocologist, he thought the something in my ovary is a fibroma. Not too concerned. Lining of endo I'll defined and thick. My doctor suggested hysteroscopy and do biopsy of womb. And if all is good there then we could look into hysterectomy as I'm finished with having children and my mother and grandmother had to have hysterectomy as well in their 40s due to problematic fibroids. I agreed to this. He sent me for blood test ca125. It was 96. Doctor not concerned because of the fibroids. I mentioned to him that I have difficulty emptying my bladder at night and he said fibroids can do that. He also sent me for a pelvic MRI. I've had the MRI, and the hysteroscopy/d&c. On day of surgery, my doctor told me he got the results of MRI. No free fluid shown in MRI but left ovary has something solid in it and radiologists can't say what it is. It is painful before during and after period there. I also have trouble eating asuch as I used to. I get bloated every day the last two months but only after eating and can be quite painful too. But I know there's no fluid so that's good. My doctor is sending my MRI report to mater hospital for second opinion. A team who specialise in ovarian cancers. And he said if they think it's something sinister, then they will take over. I'm currently waiting on biopsy results of hysteroscopy too. I'm 42, and I feel I'm over thinking it or worrying unnecessarily, but at same time, I'm trying to be prepared just in case. It is more than likely nothing to be worried about, but just wanted to check if anyone else has had similar experience that they can share with me? Thanks