Wandy, He has given me a drug called lansoprazole. Low dose (15 mg) once a day. Hope that MRI appt is soon.
Jane, I guess everyone who saw you did a double take. I am sure they were saying, "What is she doing here?" It was nice of the surgeon to offer you an open door, too. You must have made an impression on him when you had a meltdown before. A good thing really as it reminds the medical staff they are dealing with a person not a just a disease.
PS. Jane, Congrats on the all clear at your appt.
Hi Cherry. Hopefully the flames haven't burnt a hole in your tummy yet! I had to smile at your story - just the sort of thing I would do...
Appt fine yesterday - got to go back for another bone density scan, but just routine one to see how the bones are coping with the Letrazole. My mammo's all out of sync, cause I had one during treatment, so I get that in July, back in August..
Any news for you yet Wandy?
An old friend of mine was diagnosed with BC a year after me. She's in her 80's and pragmatic and says "I've had a good life, my heart's dodgy, xyz is wrong and now I've got cancer. Any one of those things could take ma off, so I'm not going to worry about it." They treated it with Letrazole which worked really well for a year or more, but now it's spread. She was an inpatient for a couple of weeks, discharged home at the weekend, and I knew she ws coming into clinic yesterday lunchtime, at the hospt where breast unit is, so I hung on to see her. She'd gone in when I got up to outpatients... so I sat in the corridor with all the others.... COnsultant surgeon walked past and did a double take. Onc came out and did a double take. BCNs came out and asked if I was OK ! One knew I was coming to see my friend, and she came out and told me they were going to admit her... onc called me in to clinic, but not to see her, to see him, to ask if I was OK, because last time we'd met in the corridor (November!) I'd been upset about someone who'd died with BC... (a member of staff I'd been chatting to weeks earlier about her BC). I said that was different, and that this lady was ready to go.. and he said I should go up to the clinic in my own hospital to see him if ever I was worried.... sweet of him. (Not sure what on EARTH he would do if I DID, but kind of him to offer!) It was quite amusing seeing all their faces. Must try to get to the other hospital to see her today.... Off for the weekend early tomorrow to see our son & DIL in Newcastle...
Hope you all have a good weekend when it comes
Sorry, forgot to respond re your coffee thoughts. Absolutely love to do that. Let me know when you're in Bolton and we'll see if we can get together.
No MRI date yet......Am going to chase if nothing through by tomorrow....not sure why it's taking so long....
Glad things are moving along for you. I know what you mean about checking the bag. I've nearly thrown away a box of meds thinking I'd got everything!! What have they given you for your stomach? I've just recently been prescribed Omeprazole because I take so much Ibuprofen. It's a new NICE guideline to counteract potential ulcer problems......
Have a good day all.
How did your check up go Mandy? And you too, Jane? I think you made a reference to your check up being this week, too. Wandy, do you have a date yet for your MRI?
Just to prove that you are never too old to learn a valuable lesson, I learnt one yesterday. "Always empty the bag completely". When I got my new pain meds last week, I collected a large bag from the chemists. I took out the first few boxes and didn't dig to the bottom as when I looked in it it appeared to be more of what I already had in my hand.
Yesterday I finished one of the blisters strips of meds and decided to check how many weeks worth the doctor had given me, so I knew when to re-order. At the bottom was a box of a medicine which I was supposed to be take first thing in the morning an hour before food, to stop the anti-flames eating a hole in my stomach!
Had my contrast chest CT and MRI yesterday. The onc is going to phone through the results as soon as he gets them.
Love, Cherry x
Ninja, you must rattle with taglets some days! I thought perhaps the taglets name came from a child. One of mine called anti-inflammatories, anti-flames, many years ago and I only just remembered recently. They weren't learning to talk, she just didn't hear what was said clearly.
At the moment, I get up in the morning and take anastrozole and 2 x 30/500 co-codamol. After breakfast, I take naproxen 500mg (the anti-flame) and Adcal D3. Lunch 2x 30/500 cocodamol. Dinnertime, 2 x 30/500 cocodamol. After dinner, another naproxen 500mg. Bedtime 2x 30/500 cocodamol, adcal D3 and a senna tablet if I didn't go to the toilet that day (SE of the painkillers). I am no where near the amount of medication you are taking but I have suddenly gone from anastrozole and Adcal (3 taglets a day) to 13 or 14 a day and know that I am going to have to get all these tablets organised, especially as there will be more in the future. Looking for a phone app today that will send me a reminder. There must be one somewhere.
I agree with Wandy. You are a very strong woman to cope with all the health problems you have to deal with. Hoping you had a good night and the pain is better today.
Rach, Having a reconstruction is a very personal choice. Maybe your onc keeps offering so that you know it is still an option if you change your mind in the future.
Jane, I was discharged by my onc in Dec 2011 about 6 weeks after I finished RT. I saw my surgeon for my checkups. I had a WLE so would not have needed a recon. I was asked early on if I wanted a prosthesis to help fill the crater left behind behind but I was happy as I was and it was never mentioned again.
Jude, I was probably just being over sensitive. My politics are a bit left of centre and I feel guilty using my BUPA to get treatment. My problem, not yours. I had private health cover through my ex. which I never used but when we parted I decided to go for everything I could and got him to pay for private health for myself and the children after we divorced. It was a small thing but it seemed important at the time. (I also managed to get 2/3 of his pension - much more important!).
Wandy, My eldest daughter lives near Bolton. If my treatment allows I am going up for a visit. Maybe we could get together for a coffee. The Lakes are only a short drive from her place.
Good luck this morning. Crossing all fingers and toes here.
Love, Cherry x
It would be lovely to get together Rachel...., maybe we can organise with Beverlie when she is up, and don't you come to the Lakes a lot too Ninja?
Cherry, I'm glad you are getting the support you need from your team, and glad you are able to keep the pain under control. Don't worry about posting on here-we have all been through so much together and I hope we can continue to support one another and rant to one another for a long time to come. I just wish there was something useful I could do to help you.
Ninja, I hope you start to feel much better very soon. Keep looking after yourself and don't try to be superwoman. You have been through so much. My onc keeps nagging me to have recon and I won't-I don't think he "gets" me at all!
Wandy. Next time I am in the Lakes we must meet for a coffee at least. We usually come up at Easter but haven't booked anything yet as the girls are both revising, one for GCSEs and one for A levels. I would love to meet you all-it's a shame we can't arrange a get together.
Jane, Jude, Mandy and anyone else I've missed-I send you all a virtual hug.
Take care one and all
Thanks Wandy but I'm neither the B word nor the I word; just muddling through being given a poor hand of cards.
I found out what the "three day blues" was in hospital after the TRAM. I'd never heard of it before, but the nurses said that everyone gets it after a very big op. I just started blubbing, whimpering about how I had FMS, Crohn's, skin pigmentation loss, hair pigmentation loss (both in small circles), bleeding bladder ulcers, then BC, and how it wasn't FAIR that I had so many incurable conditions when other people run around in full pain-free health! weep, weep.
My brother said that he had third day blues after a cardiac by-pass, too, so it's not just women.
So no, I'm a wimp. and your taglet count is also huuuuge!
Dare I say it???.....you sound a bit brave and inspirational to me!! I too take loads of 'tagletz'!!
I take Tamox and Adcal and Omega3 and Glucosamine with Chondrointin and Ibuprofen in the am, then ibuprofen and paracetamol during the day, then Adcal, Omega3, G&C , garlic capsules, omeprazole and paracetamol at night. Taken with plenty of vino I manage to stave off most pain!!! Hey ho, at least we're here!!
Beverage should have reached you by now.
The taglets (name coined by one of the kids when s/he was learning to talk) have built up over the years and it's just a routine that I know now. Some have to be taken with food, some have to be taken NOT with certain foods etc. Plus I have a daily self-administered heparin injection for a month at the mo. That's tiresome. I can't use my tum because it's stitched up and swollen so I have to use my leg where the skin is thicker so I have to 'stab' a bit more. Lovely.
The awkward thing is travelling with large packs of them. For domestic trips i just put them into butty bags but for foreign travel I need to keep them in their original packets which are very bulky. They fill up a rucksack!
But, I live with that, and the constant FMS pain that's been with me since 2002. I'm alive, and since 2011, each and every day is a bonus. That's how i see it.
How do you keep track of all those medications? I am only on 4 so far and think I might have forgotten to take my anti-flame this morning. Must get more organised!
Send hot beverage, please. Milk no sugar. Thanks.
I've got paras and codeine but it's the middle of the night that gets me - when I'm timed-out of any more meds till morning.
Sleep-stuff really wouldn't be compatible with all the other cr*p I have to take for my other joys of Crohn's and fibromyalgia. I have to take an anti-convulsant for the FMS; can't take any anti-inflammatories cos of the Crohn's. Exemestane cranks up the FMS pain. Everything is fighting everything else.
At least now that the 'tibiotics have finished, I'm down to only eight taglets at breakfast. Sigh.
Anyone fancy a nice hot drink? I can't lift the kettle yet but I have "staff" and I can get him to send you all one down the modem 🙂
Ninja - What have they given you for the pain and have they given you something to help you sleep? I hope you have postponed any overnight visitors until you are feeling a lot better.
I occasionally get visitors who want to benefit from my spare bedroom and proximity to London. Just wished they lived somewhere that tempted me to return the favour. My rule is that if you are invited, your welcome. Otherwise, make your visit short and sweet.
We certainly get more staying guests now that we live near York rather than the edge of Leeds lol
Stiff upper lips and chins up! I managed to sleep fairly Ok last night - I'm still strangely perched on an extra pillow and two cushions. I've been reading abut one lady who had to (attempt to) sleep on a reclining chair for 8 weeks after her TRAM flap. I fully understand why.
Best wishes, hugs and stuff for everyone waiting for medics and meds and things xx
The Michelin piece made me laugh out loud. It was a real swipe at the pretentiousness of some restaurants.
I know what you mean about the 'joy' of visitors who come to see you because your home is located somewhere they want to visit. I have a friend who lives in Spain most of the year and occasionally tells people who wish to visit that they are going back to the UK and not at home, just to have some peace and quiet.
Do you have a date for your MRI yet?
Have had visitors so haven't been on for a few days. One of the 'joys' of living in the Lakes National Park!!
You keep posting here. We are all with you, in your pocket, in spirit, and on here. Sorry you are still in pain, hope you can get that under control but am glad you seem to have a very proactive team.
Keep your chin up and keep posting! Am still waiting for my appt......
P.S. Love the Michelin piece!
I slept well last night depsite increased pain in the site of the mets. I asked a ? on the secondaries thread about how long it would last because someone will have experience of this.
I just thought I would tell you that if you have yesterday's Daily Telegraph, and skipped through the travel section quickly without really reading it, check out Anthony Peregrine's article "A few pointers for Monsiuer Michelin". An alternative view of how Michelin should rate French restaurants. V funny and often true.
I hope he doesn't mind me quoting him:
"the maitre d': You wish to dine, monsieur? (No, I wish to play croquet. Please clear a space) - 2 pts"
"Arrangements of dots of sauce on a plate are culinary masturbation. Lose 10 points"
"there's no point in making eau d'cologne available in the WC. No one readily returns to the table smelling of something they picked up in the bog."
Thank you for that Jane. It made me a bit tearful to think that I have support from so many good ladies here.
PS. Good luck at your appt next week.
Ninja, I confess I didn't know anything about TRAM flap ops, so just looked it up on line. That is one helluva an op you've had. Be gentle with yourself and may the healing continue.
Here to hold your hand and I'm always in your pocket.
I'm geting better slowly but it's been a shock how big this TRAM operation has been xxxx
I don't know if I am being treated on a Sat. morning because I have gone private, or because I know that at the cancer centre I am attending they are treating paitients, NHS included, until 8pm in the evening during the week. So, I shouldn't be surprised if they are doing Saturday morning clinics as well.
It was my GP who suggested I go private, after spotting that I had BUPA from my notes. I think he may have been pushing me to get treatment asap because he was feeling a bit guilty. I had been back to the surgery several times with the sciatic pain, which they were a bit dismissive of because the original X-ray showed degenerative changes. I think he got a bit of a shock, as did I, when the MRI said "destruction of the sacroiliac joint". Don't worry. With the stronger pain killers, I am virtually pain free and the onc says because the pelvic bone is so strong it is very unlikely to fracture. The MRI I had was just of the pelvis and lumbar spine. This MRI showed it was only in my left joint. The rest of the MRI was clear.
This first treatment this morning is to stop further bone loss. The onc felt is was important to act on this now rather than wait until my full MRI and CT when we will get the big picture and decide on what chemo to go with.
BTW, for those of you who are HER2, my onc said the progress in treatment is very encouraging. NICE approved a new drug just last week and there is a lot more in the pipe line.
I am very aware that most of you are having annual check ups shortly and are worrying in anticipation of the results. If my recent news is too much to read for some, just say. I will stop talking about it and can keep in touch by email with those who still wanted to keep up to date with how I am doing. I have read extensively on the secondaries board but don't feel it is the place for me, so can only see myself posting here from time to time.
Love to all,
My original status was ER + (3/8) PR - HER2 -
Apparently, your tumour status can change. This is true in about 18% (although some reports say up to 30%) of metastatic tumours. If it is now expressing HER2, they will start me on Herceptin.
Saw my onc this morning and feeling much more poistive.
He's ordered a chest CT and top to toe MRI for next week. Going back to the hospital tomorrow morning(!) to start IV bisphosphonates (Zometa) to strengthen my bones. They have already taken bloods. He wants to do a biopsy to see if my receptor status has changed and he will order up chemo depending on the biopsy results. There is a possibility that they cannot do a biopsy but they will do the chemo anyway. Reassuringly he is willing to try all sorts of different treatments to get it stable and said he may do some local RT to reduce my pain if needed.
I will keep you updated. I do appreciate having all my May friends here to hold my hand.
Thank you again everyone for your kind thoughts.
I do appreciate hearing success stories about other people who developed mets but still had a good quality of life for some years after. I read on another forum that one onc told his patient that he had been treating another lady with bone mets for 17 years. So it is possible.
I started on stronger pain meds and anti-inflammatories yesterday. I asked my GP if he could help me out as I was taking ibroprofen and the weakest dose of co-codamol. He was really nice and made sure that the prescription was available for me to collect at the chemists later that day. I am so grateful as now the pain is much more managable, almost gone. I think I was a bit high after I took the first dose but the second didn't effect me. I slept better last night. Woke up once, took another couple of tablets and fell back to sleep a short time after.
I am seeing the onc tomorrow morning. I think/know it is going to be more chemo. I had 6 FEC the first time around and when I asked him why no tax, he muttered something about wanting to keep that back in case I needed it in the future.
Wandy, I will keep my fingers crossed for you and hope you have a clean MRI. Let us know when you have your appt. and your results. If you have not had an MRI before be prepared for the noises that machine makes! If they offer you music or radio take it.
Good heavens! What a ****er Cherry, but, as you say, folk can and do live long and active lives (I gather) with secondaries. Fingers (and paws) still crossed. Wandy - let us know how your MRI goes....
As a group, we seem to have done very well so far... long may that continue to be the case. Check up next week for me, but I've no cause for concern that i know about...
is it really 3 years since we went through the trauma of losing hair... being poisoned.... hiding in the Woods...
Ninja, That sounds very messy and painful! At least you had your recon early and know you can put that hurdle behind you. Shame about the antibiotic making things worse.
Glad you are at home now and making a recovery.
My tissue expander scar had got very infected because the skin was thinning and an oozing hole was opening up in my chest. I was taken in quickly and they sorted it out and did the recon a month early as well.
I was very poorly afterwards due to a bad reaction to one of the antibiotics; hence the longer stay in, but I'm home now.
Have another hug xx
Thanks Ninja. I hope your surgery went well. You were going in for your reconstruction, I think.
Like the lady you mention, I feel well in every other respect. Just pain in my lower back, sometimes it is very bad but other times it is bearable. It gets worse as the day goes on. I wake some mornings and it is fine. No pain at all but by the evening I know it is there.
When they got the results of the Xray, I couldn't quite believe that I was in as much pain as I was with just age related degenerative changes. I kept saying it wasn't getting any better. It was the physio that referred me for the MRI. If they can get the pain under control and get the mets stabilised I will be happy. There are some ladies with bone mets on the secondary threads who have had them for many years. I am hoping to be one of their number.
I've just caught uo with this - I've been a hospital for a while.
I can't use the words I woud like to due to the strict moderation of this site but f***, s***, b******s.
Gentle hugs to all suffering or worrying. One local lady I have come to know was Dxed with bone mets a while back and she is as fit as a fiddle - it's not necessarily going to get any worse. Hers is just monitored. I do hope that yours is like that, Cherry.
I have started a thread on the secondaries board to ask for advice about what to expect on my first visit with the oncologist. There are some ladies on the secondary board with positive stories, especially with bone mets. It seems that if it does spread this is the place to get it as there is more than can do to keep them stable. Really need some pain relief as a priority but the GP is sorting that out.
My daughter is coming with me on Friday.
I'm sure you are still shell shocked. Will keep in touch via here and if you want to email or anything else..do.
I'm hopeful that all will be well for me. I'm sure it will be!!
Get as much info and support as you can from the secondaries boards if that works for you. It doesn't for everyone. I have another 'Woodie' chum who also has secondaries but doesn't want to go on the secondaries boards. Everyone is different....I'm sure some more of the May girls will be along soon and will offer loads of support too.
Much love to you.xxxx