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Juma
Member
since
14-10-2017
17
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4
Hugs
30-12-2017
09:06
Sorry it's a bit of a side-step of a topic, but does anybody else struggle with the layout of this forum?? I don't know whether it's the Android platform I'm using but I regularly get locked out mid-post ( it could be something I said!) or I post and then can't see them. I've tried using the app but can't set a different landing page - it takes me straight to 'Moving Forward after bc' which feels like a bit of a slap in the face so I've uninstalled it. I find this community more relevant, but I must admit I'm using the US sites more just because they're easier to navigate. What platform do you use and is it more usable than mine? J x
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29-12-2017
08:54
Thanks didi62, I did try to go through this site but it doesn't seem to be set up for secondary dx. We leave around 6am on Monday so don't really have time to call them. I finally found cover but they scorched me on the winter sports supplement! x
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29-12-2017
07:23
Sorry if this duplicates my post but the first doesn't appear to have uploaded. Can anyone recommend a travel insurance company? My husband and I have decided a last minute ski holiday flying on New Year's Eve to France. The best quote I have found is £466 - a bit of a hike since last year's £10.99!! Thanks J
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29-12-2017
07:11
Can anyone recommend a travel insurance company? We've decided to go skiing for New Year in France last minute but best deal I can find so far is £466! Bit of a hike from last year's £10.99... thanks J
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19-12-2017
09:56
Hi LordBryron, sorry you had a dismissive GP, as Bon said it is unfortunately quite common, I too have had experience of this. I think feeling isolated and depressed at times is normal, how can it not be? To deal with them I think coming onto this forum helped me as nobody else can really grasp how desolating this experience can be - I've found even other BC patients who are not secondary recoil in horror. Playing with my kids also makes me feel better - and worse at the same time - I spent yesterday afternoon glueing glitter to pine cones and just about everything else in my kitchen! J x
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15-12-2017
06:38
Thanks Mohan, I will ask Inc about it at next visit. Bad day today. Just finishing the worst menstruation of my life which has left me utterly exhausted today. Spoke to BC nurse who is happy that it has now subsided but I'm thinking of pushing for my ovaries to be shut down at next once meeting. It will bring its own challenges but I can't be housebound like this every month. Now laid out on the sofa while husband is doing everything - without complaint - but I feel useless. Sorry for the pity party, just need to get it out x
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15-12-2017
11:03
Can anyone offer me some advice on periods whilst on capecitabine? I'm now on my second cycle of CAP and my oncologist said that the chemo would more than likely dampen down my fertility. Although my period was late by a few days, it has been really heavy this week. I spoke to my BC nurse this morning who had never come across it as a se before and asked me just to keep an eye on it. Does anybody have any experience of this? x
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09-12-2017
04:30
Hi I had my first bone infusion yesterday - zometa - wasn't feeling too great due to a cold but went ahead with infusion and second cycle of capecitabine as blood counts etc were all good. Quite poorly with flu-like symptoms and high temp during the night so ended up at hospital all day on iv anti biotics just in case - all ok now though. My question is do you feel pain in the bones where the Mets are following infusion? I got out of bed like I was 100 yrs old this morning and I was warned my bones might feel a bit creaky but it seems to me to be where my Mets have been identified. Am I just imaging this?? Wrapping presents is on hold tonight - cuppa and a Christmas movie instead I think x
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09-12-2017
10:36
1 Hug
Hi ladies, second opinion went really well. Consultant was very honest and open. Told me that he would in fact have gone down a slightly different route - palbociclib - but told me that capecitabine was a good route too. I think the chemo is preferable for me at this stage to get the primary tumor to a reasonable size. Bit concerned that palbociclib isn't being used as yet for second line treatment but I'll cross that bridge when we come to it! Unfortunately have a wee temperature today so sat in acute ward having Iv antibiotics while waiting blood results - not the Saturday I'd planned but at least I've got me feet up 😊 . I hope yesterday went well happy-go-luck, did you get on ok? x
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04-12-2017
12:16
Hi Clarence, I'm sorry you've found yourself here. I'm recently diagnosed too and felt overwhelmed with fear only a couple of weeks ago. Once I'd had my scan results I found more focus and have felt more myself since. I've found concentrating on the things that I can do helpful in coping. Looking after myself, eating well and exercise. Waiting for the scans is excruciating, I hope it won't be too long. J x
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30-11-2017
07:46
1 Hug
Thank you SML and the same back to you. 🤗 I have my second opinion appointment today and I'm going fully armed with a long list of questions now I will had time to get my head around the terminology. There are so many things I didn't think to ask at the time - too much of a shock I suppose.
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27-11-2017
10:15
1 Hug
Hi, it's such a support to read these replies - and I have to say comforting to hear your cancer comments - I'm so glad it's not just me! Only diagnosed a few weeks but I've had several "stay positive, it's half the battle" and, my favourite "you've got to fight it". Really, with what specifically?? Though, I know it is kindly meant so I nod and smile. I had my PET scan which confirmed bones Mets, more extensive than those that showed up on the CT but at least I've started treatment now (capecitabine, surgery and rads off the menu for now). I've also got a second opinion appointment on Thursday which I think will give me some Peace. SML, I hope things settle once you've had you scans. I did feel better just getting past them. Best of luck with the result xx
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20-11-2017
06:12
Hi all, I relatively new here with initial diagnosis of stage 4. I was wondering whether somebody could share their experiences of gaining a second opinion? Not for diagnosis but rather treatment. My PET scan results showed extensive bone Mets which didn't show on the CT scan. I have met with my oncologist who has prescribed capecitabine. I don't doubt that it is an effective treatment but given my circumstances I'm not keen just getting one opinion. Has anybody found it an easy / difficult process or have any advice? Thanks J
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09-11-2017
03:05
1 Hug
Thanks for your replies, it's good to hear that you're all doing well. I'm desperate to start some form of treatment but I have to have a PET scan before they will book the appointment in. The waiting feels worse than receiving the diagnosis.
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08-11-2017
10:56
Hi, I've not been on here very long but I was wondering if anybody else's initial diagnosis has been stage 4? I was diagnosed a couple of weeks ago with BC and have just had the results of the CAT and bone scan with Mets present in my spine, rib and collarbone. Although my consultant hasn't categorically stated that it is stage 4, am I right in assuming it is automatically stage four if beyond your lymph nodes? I haven't started treatment yet as pathology not long completed. I know that it now puts me on a different treatment pathway - therapeutic rather than cure - though I am still going ahead with, chemo, surgery, RT. Is it generally just less aggressive intervention at stage 4? Thanks
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28-10-2017
12:08
Hi, I’m a new here. I’ve recently been diagnosed with cancer in my left breast which has spread to the lymph nodes. I’ve had CT and bone scans and I’m now waiting for an appointment with my oncologist. Unfortunately, I have had BC for some time now: I visited my GP about 18 months ago who told me it was ‘definitely’ a cyst and it was only when I went to my new GP in August to see about aspirating it, that it occurred to me that it was anything but. Thankfully, he arranged a referral to the breast clinic and in the last few weeks I’ve had the biopsies and scans and now awaiting the results. I’ve had the difficult conversations with family and friends. The conversation with my 8 year old son was surprisingly much easier than I expected and as long as I wear a wig when I’m out I think he’ll be ok with it! I’m not sure how much my 3 year old understands but he knows I’m going to hospital for some medicine which might make me feel a bit poorly. Anyway, that is where I’m at. I’m still deciphering the abbreviations on the posts but hopefully I’ll get there soon. J x
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