Caron, cyberhugs heading your way. xx Mel
I have come to join all you nice ladies on this bone thread. I posted some questions about my worries last week and you were all so kind and wonderful and helpful. I went in to hospital to receive my news that the cancer had returned and took the news with dignity and courage thanks to all your support and advice. I think they were expecting me to be a weeping mess on the floor but I felt I knew it had come back, because the pain was so horrid. I asked about how they can help me and I have had a zoladex implant and I am due to have Radiotherapy on my spine mets tomorrow afternoon. I have been told it will help significantly with the pain. I have struggled with pain relief as I have been resisting taking Morphine but have had a long chat with my doctor and am giving it a go now as I was overdosing on co-codamol. In two weeks I will start on some Bisphosphonate drugs too.
I will let you know how I get on and look forward to chatting to some of you. x
Hello, all - have been lurking here for some weeks now, since my beloved mother was diagnosed with mets extensively to bones. She started on a course of Letrozole and monthly Zometa (and after a week, her Onc reported her tumour markers in the bloods had come down, indicating a good response), but after a week, her digestion was playing up very badly - terrible distention, nausea, constipation etc. At first this was attributed to the high morphine dose, and steps were taken to get the bowel moving, but the distention, nausea and subsequent rapid weight loss continued. A scan was done on the abdominal area, but there is dispute as to whether she has mets in the peirtoneal lining. Her Onc isnāt taking any chances though and has put her on 4 cycles of Taxol (sheās just completed her first cycle - 3 weeks on, one week off). Sheās continuing the Zometa as well. However, all her medical team seem baffled by her digestive swelling and issues - theyāre not convinced thereās cancer in that area, and all her other vital organs (liver, lungs etc) seem clear, and thereās no obstruction in the bowel (I was there for an additional ultrasound to double check all these areas!) Itās baffling, frustrating and terrible to see her decline, however, and obviously, chemo side effects are adding to the complications - nausea, vomiting etc. Just wondered if anyone else had ever heard of an experience like this?
Have to tell you - you have all been my absolute lifeline these past 6 weeks since Mumās DX. Have been on here without fail every single day, as I try to mug up enough to become an amateur oncologist myself! So thank you all.
Ginny x
Hi to all the bone met girls. Sorry to read that so many of you are exeriencing new symptoms and having problems.
I too had a referral to the eye hospital. I have damage to the retina in both eyes, but at the moment it is not affecting my eye sight. Whether this is a side effect remains unclear. One thing they did say, is that the neuropathy is a direct effect of Tamoxifen. When I was told this some 14 years ago by the eye hospital, my oncologist was not impressed and said it was very unlikely. But since then things have moved on, and they all now agree that Tamoxifen can cause this eye problem - oh joy of joys!
Been having Denosumab injections now, I wonder what long term side effects this very new drug will cause. Due to a skin rash I now have to have the injections with intravenous access with Piriton/steroids coverage and 4 hours in the chemo ward for observation afterwards. Not what I wanted to hear. Been ok for the first two on this new combo, but now started being sick on the last one. I was just beginning to hope that everything would be fine and I could eventually go onto piriton orally and not such a long day in the hospital , but that seems unlikely now. This seems to take such a large chunk of time out of my life and I am quite upset by this constant medical supervision. I am not too bad at the mopment, no further progression - for which I am so grateful - so all this waiting around and treatment is quite upsetting. Sorry to be moaning girls, just had to get that off my chest. ANd I know that a lot of you are far worth off, so apologies for that.
Take care everyone.
Lucky Gal, Iām sorry that you have to join us, but congratulations on the measured way you received your bad news. I just wanted to say that, having had several doses of radiotherapy in various places (I have extensive bone mets and liver mets), it is wonderful for pain relief. It normally takes a while to have an effect, but when it doesā¦what a difference. Itās extremely early days for you, but consider asking to be referred to a palliative care nurse by your GP and ask about local hospices. Hospices sound scary initially, but they are the masters of pain relief, much more so than consultants and GPs.
I was diagnosed with secondaries in January 2010, initially I shunned - or more accurately - was not offered any palliative support. Now I have a wonderful nurse who visits me once a week. She can prescribe and liaise directly with my GP and has been enormously helpful when Iāve had periods of bad pain. I started visiting the hospice last year, I see a clinical director there about once a month (again they can prescribe without conferring with GP), I also have hypnotherapy and massage treatments. Anyway, waffling on a bit, sorry, just hope some of the info may be helpful and please PM me if you have any questionsā¦Iām an amateur expert!
Best wishes to all.
Alison
Lucky Gal I echo what Alison (Tawny) has said regarding the radiotherapy. I do not post on here often but I too have extensive mets in my bones (too many to count accordng to my oncologist!) having been diagnosed with primary and secondaries in April / May 2011. Since diagnosis I have been more or less stable just taking letrozole but towards the end of last year my lower back was very painful so I accepted a dose of radiotherapy. Whilst I did not enjoy the initial side effects of the treatment after a month or so the difference was remarkable - I now only feel a slight twinge most of the time. It was enough change to enable me to travel to Japan in April to see my son get married which was wonderful and something I wouldnāt have been able to do without the treatment. Over past month I have started to feel pain in my upper back so recent mri showed bones have deteriorated a little so starting denosumab to hopefully strengthen bones a little next week.
Hi to all the other boney girls - I am sorry that lots of you seem to be experiencing pain and other problems which is the curse of this blessed disease but thank you all for sharing your experiences - your courage gives me inspiration to face whatever challenges are ahead.
Take care everybody and hopefully the promised nice sunny weekend will give our bones a welcome lift.
Jackie xx
Hi to all here, just adding to the radiotherapy replies, I was in a lot of pain just before last Christmas and over the New Year I had 5 lots of rads to my sacrum. This is the same spot Iād had rads to just after my bone mets diagnosis in 2003. The treatment worked really well and Iām pain free again.
Hi I recently had a blast of 5 rads to my pelvis.I am just starting to feel the benefits and where I had pain it is just a dull ache althought I get a twinge if I move awkwardly.I still canāt walk a long distance and still use one crutch but a few months back I could only manage about 10 yards.Yesterday manage to get around the whole of the supermarket for the first time in many monthsā¦so actually got what I wanted as against what oh thought I wanted.
I went to hospital this week to get my meds and also the results of my bone scan. The report said improvement in the mid and lower spine area so something is working.This is the first time since dx 4 years ago I have had improvement reported.I have been on zometa,now on denosumab, and exestemane/everolimus combo for 5 months now, not sure what has worked to give the improvement but just so pleased that something has.
Sorry so many of you are having problems at the moment.Love to all boney ladies.
L xx
Thanks for the replies and encouragement. I had the radiotherapy and it was horrid and I have never vomited so much in my life. I have that under control now and am just about managing. I go see the Onc on June 10th for the Bisphosphonates and I donāt remember the name of them and they arenāt the same as what any of you lot are on. I will let you know what they give me. I just hope that radiotherapy was worth it. As I was having it I was chanting ākill the cancerā over and over and the nurses must have thought me quite mad.
I feel a bit depressed at the moment because I feel trapped in my house and not able to do anything is driving me crazy. My hubby is so helpful doing everything but I miss being able to walk my dog and even cook dinner. Arrrghh hopefully I will feel better soon. Love to you all x Sarah.
Hi Sarah, virtual hugs heading your way. Am sorry the rads made you ill, I was sick after one of mine, I renember being very tired after my rads. However almost a year on and no pain so stick with it.
There are quite a few different biophosphate about now, tablets, injections and infusions too. I have zometa which I have each month. Are you on any other medication?
Be kind to youself and take each day at a time. xx
I am back to work Monday after 11 months offā¦am so nervous.
Love Mel xx
Hi Sarah
i felt quite sick after the one dose of rads I had to a big chunk of my spine and the pain got worse before it got better. I am a few months on and the pain is better but I am taking a strong opiate analgesia, as well as Naproxen. Was trying to reduce the painkillers but the oncologist said, the damage to the spine is what it is and itās much better to take sufficient painkillers to be pain free and as active as you can be, so I have accepted it and am now trying to increase my stamina and general fitness. Totally sympathise with how frustrating it is not being mobile, but as others have said, it does take time and you need to focus on what you can do rather than what you canāt. But once in a while just bawl your eyes out and youāll feel better. Keep going! Best wishes Ali
Just a quick hello to all. I have been following the posts and Iām sorry to hear to so many of you are having a tough time.I do hope things improve soon. I donāt have anything to report. I am still enjoying being back at work and am due my first check up bone scan since dx this Wednesday.
I just really wanted to alert everyone to an experience I have had with Eurotunnel travel insurance. A few weeks ago I rang and got a brill quote Ā£78 for European cover for me and my family. I was honest when I phoned explaining I had secondary mets in my bones and that I had treatment (herceptin) every 3 weeks (my 6 blasts of zometa have finished now). I kept asking the girl on the other end to double check the price etc. The paperwork came and everything seemed fine.
Yesterday I had a phonecall from a very officious man at Eurotunnel wanting me to clarify if I was still having treatment. I explained I was and that I had told the company originally. He said he was sorry they were unable to insure me, they would credit my account and rang off. No explanation. I just feel very discriminated against.
I suppose I am just warning people to be careful. Has anyone else had a similar experience? Iāve booked to go on a cruise in August to Norway! Anyone know of any good insurance companies that arenāt going to charge me the earth or renege on a deal?
Thanks xxx
Thanks Mel and Ali, Good Luck with returning to work Monday Ali, you must be nervous but excited too. What an achievement! I am on some tablets, Metformin for diabetes and I take sulfalazine for arthritis. The painkillers Iām using are Liquid Morphine and diclofenic with codeine and paracetamol. I do cry when no-one is about but it makes me angry and doesnāt help at all. I am going to get some help from some Macmillan nurses next week and that will cheer me up a bit. Plus Iām feeling a bit better today and even managed to sit in the garden so thats something to smile about. Hope you all get to enjoy the sun this weekend. xx
Katie, thanks for the heads up about Eurotunnel Insurance. My brother has just offered to pay for me to go to Paris on holiday so will look into insurance about that soon. If I find something better will let you know. And vice versa. Shame the Insurance companies donāt feel more sympathy but its all about their profits, which is pretty damn shameful. Hope you find some decent travel insurance so you can go to Norway xx
Hi ladies, hope you are feeling ok as I know some of you have been having a tough time at mo. Well I returned to work today, was so nervous but it felt so good aftet 11months off. Training day today so children and parents to see tomorrow. I am so pleased to be back to a sense of normality. Thought Id post this as it is a positive for me. Lets hope the scans are good in a couple of weeks.
Love to all you wonderful, supportive ladies. xxxx
Mel xxxx
Mel, so pleased it went well and tomorrow will be even better - I started back at easter exactly the same way with a training days and then my class :o)
Karen xx
Hi Everyone
Scan results were not good. Has spread through menange fluid to rest of spine and base of brain. Onc says very rare. Am having chemo tomorrow (carboplatin) but he says it does not have a very good success rate. Everyone at hospital keeps saying they are very sorry. Is this really happening to me and my children ???
I so hope you are all as well as can be.
Caron x
Very sorry to hear your news, Caron. I donāt post very often, but do read the bits that interest (liver & bone) me. Not sure what to say. Take it one day at a time. I hope your treatment works, perhaps someone may have a similiar experience, even though your doctor has said itās rare.
Big hug.
Alison x
I too am so sorry to hear your news Caron. I wish you the best results possible with Carboplatin. Take Care. x
Caron, so sorry to hear your latest update. I hope that the chemo does help. A very scary and distressing time for you and your family, I hope you are getting some support both physically and mentally. Thinking of you all.
Nicky x
So very sorry to hear the latest news Caron. Hope that chemo can help somewhat. My thoughts are with you and your family at this difficult time.