Hi ff, I'm glad to know you are staying on e/e which means it's working. I have alternate mri/cts because they told me when it's in your bones it is clearer with mri. So good you are having one.
I agree when seeing onc I come out with no clue as to what she has said, a comlete block. My husband comes and then I ask him what was said and he tells me afterwards. Only thing is he can't ask qu's in there because they just look at me and don't answer, disconcerting but it must be hospital policy.
love to all, try and have a relaxed weekend.
Carolyn, I'm feeling quite jealous about your babies!
How frustrating FF, we’ve all been been there. My oncologist has has she’s not going to bother doing any more. How on earth will she know when there’s No Evidence of Disease ha ha ha 🤶🎅🏻🎅🏻?
Happy birthday Jeanette🎉🎂🍾
Carolyn, it’s quite quite normal twins to be in put into incubators. You just need to be able to quish and quash them. Mummy and daddy are going to need quite a bit of help. Xx
I'm with you on back pain, it takes over your life (not mine at the moment thank goodness). I think an MRI will show more detail if there's any more detail to show (hope there isn't) so you can be more sure where you are . I usually come away from consultations feeling dissatisfied. I wish I could 'chat to my oncologist' as Moijan seems to be able to do. It's not a scenario I recognise. Should prepare better I suppose, my preparation usually consists of getting in a state.
Good wishes for your next scans.
Hugs Bon xx
Thank you Bon and Carolyn.Well they say I'm stable and get a scan in a Feb and appt on the 15th. There were a few changes in the lungs but they balanced each other out.
They said they see nothing new with back. I wasn't pleased that they compared the CT to the Cray from a few weeks ago. I thought that they would compare it to my CT from August. Apples to apples. She told me the other day she would send me for a bone scan next. Today she gave me a script for an MRI. She said next we would do a bone scan. All I know is I hurt and we found nothing out! I have broke out in more ulcers since this morning. This girl is going to take a nap! Frustrated FF!!!!!
Had my first Kadcyla on Friday. Had a dry mouth for a few days and fatigue for a day and a half, so not too bad, I just hope it’s working.
Funnyface, good luck with scan results.
Headed out the door for scan results!! Over the last couple days I broke out with some nasty mouth ulcers. Thankful for magic mouth wash. The biggest one is along the side of my tongue. Hits my teeth every time I even try to talk. I feel like an old cow that needs taken out to pasture and shot! On the other hand a lot of activity going on this weekend with friends. Can't wait to have some fun. Comedy night and dinner Friday night. Sat night basket bingo with my oldest son. The profit from it is being given to the non profit my son works for. He has to attend. Sunday out to breakfast for SIL's birthday. I will let you know results when I get home. FF
Ahhh, carolyn........little teenies. They will be safe in incubators, but of course a little worry until they are a bit bigger. They'll be fine. There's two of them after all. i imagine them holding hands! I'm so glad you are seeing them so soon. i saw little Anna that evening. On the phone my son firmly told me that 'by the way, we're not going PINK!!'. No stereotyping. Well, that's gone out the window. She has pink genes. A little princess. And you have one of each! i'm so envious.
Yes, still got hair, although it is brushing out a lot. I won't give it the chop until it looks bad. Then a buzz cut! For now nobody else would notice. Next treatment tomorrow, then sleeping for England again!
Carolyn.........what wonderful news!! Twins! As a little girl myself I had twin baby dolls and always wanted them myself. Definitely a drain on the £££ but who cares! When you meet them please give them a little squeeze from me. Babies are what's best in the world. What it's all about.
Your scan. I would say 'no news is good news' as you have heard nothing. But I think the 29th is a long time to wait. Everybody likes confirmation. But I have a good feeling.
Take care, and congratulations. Aren't you clever? Twins!
mo xxxxxxxx (Some of those are for you-know-who.)
Congratulations Carolyn, 2 lovely new grandchildren to spoil :-) Hoping that Mum and babies are doing well and you get to see them soon.
Lovely news Carolyn, so pleased for you. The little ones have the ability to take your mind off cancer when nothing else does.
hi carolyn .
i am not too bad as finished radio and have chem tablets two weeks out of three then herceptin once every three weeks ,i have to have a ct scan to see if chemo is working ,i dont think it is but hopefully i am wrong ,have not had appointment through yet for scan,i am just so so tired carolyn ,it can not be normal,though i do have a few good days .
just hoping for some good news .
oh carolyn ,
how lovely for you and plenty to keep you occupied,i have two grandsons 25 and 22 and two granddaughters age 25 and 22 ,none married as yet but the oldes grandson is looking at next year and his partener has two small boys 2 and 4 from a previous relationship,but they are wonderful little kids and love my grandson to bits ,the oldest one has just been with aaron and he said to me i dont have a daddy i have an aaron?,how do you answer that carolyn ,very difficult;
hi carolyn ,
i am delighted for you ,and hope mum and babies are all doing well ,now you will never have any spare cash believe me
take care and lots of hugs for everyone
yes, it does put you at risk if you add your email address.....also people won't want to email, in case you happened to not be who you appear to be...we get lots of people on here who try to find out who WE are and some who just want to use the forum to pressure sell, sadly.
my gut feeling is that you are a genuine user who really needs some advice and help, and I see some of use have responded....you can also ask the moderators to enable your private messaging then you can chat privately with anyone you choose.
so sorry to hear about mum....it's harder in some ways to be a helper/carer and have to watch than go through it ourselves. My guess is mums onc is being very thorough...try not to second guess/crystal ball as it just feels so much worse then. Also googling won't help either. Try and keep an open mind...they might just want a closer look at how mums cells are developing...to rule out stuff.
you can chat on the helpline above or ring Macmillan `they are excellent.
best of luck, much love and hugs, Moijan💚💚💚
Lauren, I’ve got cancer in my bone marrow(and about everywhere else ha ha) but the effect of it in the bone marrow is that your calcium levels are great,y altered (take Adcal with vit d for this) it also effects the blood cells being produced. I’m under an integrative oncology charity (www.canceroptions.com) which help with the right type of supplements. My main effect is haemoglobin levels which fall every seven weeks which which means I have two units of blood in that time period. I keep my white cells and platelet levels within the normal range (sometimes exceeding) with a supplement available from Amazon, Mico-Sol, Agarius Blazei musherooms. There was a study in Spain and Italy which treated stage4 breast cancer patients with this. The results were remarkable and they have been with me. My oncologist wanted all of the details as she wanted to share. They are about 50-54£ a month. I started off with two and am now on 3 a day, following advice. There are always ways to move forward. Good luck, and loads of hugs and kisses B x
Lauren, I'm not sure which hospital you're at but it won't hurt to keep phoning about your next appointment until you get one. Not sure why they're looking at bone marrow but you'll find out.write down your questions before you next go in. Try not to worry they will get her on treatment and then hopefully she will pick up. I have cancer in nearly every bone in my body but I expect to live for years(maybe I'm being overoptimistic) but there you go.i'm 60.it's good newsthat her other organs are free.being misdiagnosed is really annoying and would no doubt not help your mum to feel better.i was misdiagnosed for 4 years and lost a vocal cord to cancer because of that but it is important to keep looking forward. Stay on thissite because the people on here are lovely and will help you a lot.
I've responded to your other post on the other thread, suggesting you remove your private email address for your own protectioin. I'm sure you will get a response from other ladies on either of those threads. xxxxxx
In June 2017 my mum had been feeling very unless for some time but couldn't pin point what was wrong with her she was also getting some back ache so she went to her GP which he told her it's muscular pain she went away thinking it would get better. But it started getting worse so in august she went back again and they said we will do some bloods and a x ray just to see if anything comes up anyway bloods come back high calcium and x ray on chest area come back full of small lytic lesions everywhere they could see so they referred her to the breast clinic because my mum had breast cancer previously 10 years before they did biopsys scans etc which showed she had breast cancer but this time it's in the over breast the one she had in before is clear.. she has these cancer spots all over her ribs collar bone shoulders spine and hips but no major organs as of yet! Calcium levels are making her very sick and week she's lost so much weight as she can't eat and on very strong pain meds she's in and out of hosp trying to get calcium levels down too! She is feeling very down and she can't stop thinking she hasn't got long left we haven't even seen a oncologist yet it's been 3 weeks since they finally referred her but heard nothing as of yet! She as been referred to someone else too to check her bloods for cancer now they also want to do bone marrow biopsy is this rountie? Or is there something they aren't telling us? How long did it take you all to see oncologist? And once you did how long until you started treatment and what treatment did they put you on? How long has it been since your diagnosis and how well are you all doing we want to speak to people in same situation life is so cruel to do this to people! My mum is moving in with me as she can't take care of herself anymore she struggles with the most littlest things now picking the kettle up with water in it hurts her. Is there a good possibility she is going to be here for some time or do we need to prepare ourselves for the worst if anyone can relate and wants to talk direct please email me email removed thanks for reading xx
Interesting about ports...they do dopower ports at my hospital, but mine was a rt mastec and Lymphoedema and so my guess is a port would be left side. I bottled out last time....but one day likely will need one....I seem prone to all sorts of infections so. Knowing too much, I'd worry about a port being a infection risk
the other thing is...local hosps near me - nurses etc not trained to use ports....and it's not a backwater!
recently was in with cellulitis and usual nightmare ensued re veins etc.
Nicky, You can see mine with some of my shirts. Mine is more of just a bump or small lump. Not real obvious. I don't mind it at all. It isn't a power point. My surgeon said the best place to place the port is the right side of chest bc it is straight up into the jugular vein. She said this place met site has the least problems.
Hi FF, thanks for the info about the seat belts. To be honest I've got used to it over the 3-4 years I've had the port. What I haven't got used to though it its actual siting where it is very visible under my skin and therefore I have to really think about clothes, especially tops of any sort, before I buy them. It is so prominent and if I'd been asked I would have said for them to have moved it before they fixed it in place. If I go onto a hormone/tablet treatment I am going to ask for it to be removed as it will need flushing every so often which will be a bit annoying. I have asked before and I know if I wanted another one put in I could have it done on the other side and have a power port fitted instead so I could have the CT dye injected - that's usually another stressful time when they play hunt-the-vein! At the time I had mine fitted our local hospital didn't have anyone trained to do them so I had to go to another hospital who always use the larger, older type of port. Our local hospital now does fit them and uses a smaller port, but I'd need to check if it's a power port. Either way I know another time I would ask for it to be more hidden. It's currently so obvious the chemo nurses and I have a joke about it that it's like having a target painted to my chest!
Hiwever I don't regret having one for one minute, life on IV treatment has been a breeze since I had it - relatively speaking of course 😉
AlexC., Please don't take this as being nosey. May I ask why they say there might not be a treatment for you?
This is your life and you need to fight for yourself and your babies! Do not let the drs push you around. Please get a second opinion! HUGS! FF
Alexde, I live in the USA. They seem to give out more ports. I have had my port since March 2006! It is on my right side of chest. They flush it after they access it. If you are on an oral drug they like to flush it at 6 to 8 weeks. Mine works so well when not in use they flush it every 3 months. If you aren't good with needles they can give you Emla cream to put on to numb it. You need to put the cream on about 45 mins to an hour before so you are numb. With the port you can get your bath or shower with no problem. You can swim. Fight to get it!! FF
Nicky, Ask your car dealer ship if they have seatbelt extenders and explain about your port. Here in the US most places give them to you. This ma k rd the seat belt buckle in a different spot and the shoulder strap will move over some. Mine doesn't hit my port with this. You can also buy things to pad the shoulder strap. FF
Generally I'm doing OK. A few ups and downs in the past 12 months, mainly from getting a HER2 positive result from a biopsy and being treated as such. However on clodpser inspection of the FISH test (which is the more actuate one carried out of the original test inconclusive or weakly HER2) it was found out I was only just over the 'score' for what determines that you are HER2+. Currently waiting to probably start a trial based around hormone therapy having just completed 8 cycles of eribulin. Anyway, enough about me! Just to say if your veins are as shot to pieces as mine are then definitely consider having a port. I had one fitted a about 3 years ago when I started on Herceptin/Docetaxel/pertuzamab and it made the whole IV trearment so much quicker and none of the hunt-the-vein that all of us with lousy veins have to suffer. The chemo nurses also preferred it as it's quick to set up. And, unlike a PICC line it doesn't need flushing weekly and there's little risk of infection. In fact most of the time you don't even know it's there - just make sure it is fitted where you are comfortable - mine is pretty much right underneath where my seatbelt goes across my chest, something I hadn't even thought of when it was being fitted.
Good luck with Kadcyla and let's hope it knocks the little uggers for six
i remember you from years ago, I hope you are doing ok. It’s nice to see a familiar name after such a long time. You are correct I have got used to feeling well, seeing an onc every six months and having a small injection every 3 weeks. The I/V is likely to be a problem as I have lymphodema in my left arm and my veins are shot with all the previous intravenous treatment, chemo and then herceptin. I am going to see if I can get a port fitted.
thanks for replying. The onc did his best but was over-ruled by the MDT who insisted that NICE guidelines were followed to the letter. Bizarrely my onc also works for NICE. We did discuss getting a second opinion but I decided against it because another area will be governed by the same guidance. I am going to leave going on a trial until later. I am ok having Kadcyla I just wanted to save it until later.