Hope you are all ok.
Moijan, Paula and Nicky, thank you so much for your encouragment and advice. So appreciated.
Nicky, I am so encouraged by your being on Cape for 18 months and not having the antisick, and that your tumours responded. I've been given domperidone for nausea. Yesterday (day 1) I was nauseous all day. But not today - so I'm now not sure whether that's the chemo or the ascites pressing on things.
Moijan, ahh hun, feel bad now you envy me - I don't mean to moan. I'm just a baby about it all. Yes I'm on a reduced dose so hoping that it keeps the se at bay and I can managage longer than I did on pac.
Paula do you take the metoclopramide every day? Likeyou I had so many side effects on my previous chemo so feel a lot is riding on this. To hear of you three ladies who had great results on cape is thrilling.
Being called upstairs - daughter getting ready for prom - so signing of too quickly - but have a lovely weekend all.
I know what you mean about administering chemo by yourself! I felt the same when I had Cape back in 2013. I thought I would be nauseous taking them and got metaclopromide prescribed but this absolutely wiped and spaced me out! Different anti sickness work in different ways so it might be good for you but not for me! Ask/try another type if it isn't right. As it was I stopped taking any anti sickness and felt fine the whole 18 months I was on Cape. It shrank my liver mets and, at the time, my liver function tests were throwing out very high numbers! Sometimes too high to have even Cape. So, wishing you luck and hope the side effects aren't too bad. Have a read of the Xeloda/Capecitabine thread, It's in the Treatments and Medical issues part of the secondaries forum, there's quite a few ladies still on it and many more who have taken it previously so there's lots of advice should you need it.
I am on my 20th cycle of Cape, albeit on a 60% dose after a few SEs on the full dose. At this dose I've found it very doable. I take metoclopramide for nausea but (touch wood) have escaped the 2 most common SE - the big D and sore hands/feet.
I had every SE going on my previous chemo and hormone treatments and they didn't work so was really pleased with Cape. Every 3 month scan since starting has been stable or slight reduction. I have major anxiety every scan that it's stopped working and I have to change which would be a nightmare.
If you do get bad SE speak to your ONC straight away as a dose reduction is quite common.
Good luck, Paula
Hi all - lovely to hear from you all. I read your replies, but haven't had a chance (laptop to reply until now).
My cystoscopy was fine - and showed no abornalities. Which is good.
However the seven weeks off have increased my tumours and my liver function is up the spout (well what a surprise). However, there's no choice but to start chemo, so today I'm due to start capecitibine. I have to admit I thought it would be lovely to just have tablets at home, and they've said that the side effects aren't severe - but they said that about paclitaxel and it buggered me! I'm sitting here waiting for supper absolutely DREADING taking the first dose. At least in a ward someone else gives you the chemo. Deciding to take the tablets by myself and having the strength of will to do so is suddenly terrifying. I hate being sick, so am scared to read that this is more likely with these tablets. Anyone else on this drug?
On the positive side, I am relieved that I'm starting something that has the potential to control, or even shrink my tumours. I feel like I'm quickly running out of options as the paclitaxel didn't work.
Hope everyone else is going on okay xxxx
Hi Lollymum, I agree with ff, 7 weeks is too long to be off chemo. I don't know your age but I am post menopause and was getting uti's, I use a product called 'yes' and have never had one since. Regarding the cytoscopy, don't have one if you feel better now, I had a bad experience and would always have ultrasound instead now. Hope this helps,
hugs to you xx
Lollymum, I would be suspicious of the chemo causing the bladder issues. I would ask about being off meds for 7 weeks! Call them up and tell them you're not comfortable with that or maybe after the caustically they could ask for results STAT and get you back on a chemo. Although at this point now the 28th isn't that far. Hugs girly! FF
Hi funny face and nicky, thank you for the replies.
Well mixed lot for me. My CT scan showed shrinkage in my original liver mets (on the Paclitaxel), but new tumours.
CT scan, which showed as "not normal looking", they are sending me for a cystosocpy under general anaesthetic next week.
Because of the new tumours and the bladder "suspicious area" they have suspended treatment to my liver mets - which terrifies and angers. By the time the cystoscopy results are in, say by 28th June, I'll have had no chemotherapy or other treatment for seven weeks, which is really scary.
In the meanwhile, since I last posted, my bladder symptoms have disappeared almost completely.
I don't know what to make of it. Surely if it were mets to my bladder the symptoms would not have calmed down once off chemo?
THere isn't much on the boards about spread to bladder or bladder problems caused by Paclitaxel. Does anyone have any advice or experience?
In the meanwhile because of the enforced chemo break I'm feeling better, and so this Saturday we made a snap decision to go to France for the day. Beautiful sunshine, sandy beach not far from Calais and wine shopping (alas not for me - god I miss a glass of white wine!). Nice to do something normal.
Lollymum, I agree with Nicky! Besides that I want to wrap you in bubble wrap! Big hugs! Hang in there! FF
Hi lolly mum - you have had a rough old ride haven't you? No wonder you've not had the strength or inclination to post, it can all get us down at times and when I'm going through periods of uncertainty I often don't post much.
Two things, one is the UTIs , I'm sure Moijan wouldn't mind me mentioning that she has had a lot of these whilst on eribulin (as her posts have said anyway) so it may be worth sending her a PM or posting a question the eribulin thread (the one that starts something like Chemo Buddy Needed.......)
Secondly I have had problems with my liver mets, some responding very well to treatment, others (or one in particular) not so good. Although it's not something you probably want or feel like having at the moment is it worth asking for a liver biopsy? If the growing lesion/s could be biopsied maybe a different treatment can be offered? I know my SBC changed from HER2- to HER2+ and I still have some confusion as to what my liver mets are now due to conflicting test results.
Hope things settle soon and you begin to feel better and the new scans don't show up anything other than irritation etc.
Hi ladies, I am sorry I haven't posted in a while. I've been really down and chemo (Paclitaxol) has been really difficult.
By now I should have had 11 of fhe weekly treatments, but I've only managed 8 (or should have been 12 by now perhaps) In the beginning I had low neutropenic counts as you know, and infections, and more recently the side effects of the chemo have caused skin reactions and mouth ulcers and peripheral neuropathy that meant my oncologist wouldn't sign me off for treatment.
After seven treatments I had a ct scan. this has shown that my original liver mets have shrunk, but I have new tumours in my liver. I don't know what to make of this, and obviously it's not what I hoped for. I felt sure that the taxol would work as it did for my original bc 3 years ago. But this looks like resistance.
So I'm being put on a tablet chemotherapy.
However before that I have to have a break from treatment (which is worrying) as my bladder wall doesn't look normal on ct scan, and I've been passing blood and clots. I'm terrified as you can imagine. Some antibiotics have cleared up the bleeding, but the urethra is still really irritated. I'm being sent for a cytoscopy (I think that's what it's called) by a urologist to see what's going on. I've had three UTIs since starting chemo in March, and it's hurt to pee for months but no one has taken it seriously (I've mentioned it so many times to my oncology team), until this scan. I'm so scarred it's cancer there too. My oncologist says she's never seen bc spread to the bladder. My GP thinks it is the chemo irritation the bladder, but i just wondered has anyone else had constant cystitis on chemo? It isn't on the side effects leaflet, but i notice that the CHristie leaflet does mention it online.
Grateful for any advice or sharing anyone can give. xxx
Lollymum and Abney, Just checking up on both of you! I hope you are both just busy! FF
Sorry, just catching up on here ladies and saddened to hear about the struggles you are facing, they are truley never ending at times and you must be exhausted from fighting. It is understandable that we all become disheartened at times, who wouldnt? its such an awful disease, so cruel and the treatmnets can be so cruel too. Thinkong of you al tonight and sending hugs. I am new to his forum, but i can see that you are never quite alone and that is something precious.
ps had a wee giggle at my slip lol xx
Lollymum, sad to hear you are feeling down , we all get like it with no actual reason. You have done really well to get yourself out in the fresh air. I had weekly paclitaxel and from what i can remember was fairly ok on it. Unfortunately it didnt work for me for very long but i know there have been lots of good results from it so have everything crossed for you. Hope bloods are fine and yo can have roound 2. xx
Haven't felt up to posting all week. Can't really point to anything just finding things hard to face.
Last week was a little bit up and down: I wasn't well enough to go onto the trial drug I'd been put forward to. Never mind, so now I'm on weekly pacitaxel. Has anyone else had this? The breast cancer care leaflet about it has scared me a little as it only says it halts the growth, rather than reduces the tumour size. Does anyone know any more?
At least I was well enough to have the first chemo. I've been tired (not sleeping doesn't help), and low but otherwise not too bad.
Abney - really keen to know how you are this week, and whether things are improved. I can't imagine how scary the heart thing must be. Another gentle hug hun x
Tomorrow is my second chemo. I actually managed a walk today and got some sunshine, and hoping that that has helped my bloods for tomorrow.
(Lollybum! ha ha)
Abney, dont know if this will be of any se to you but when i was really ill with pleural effusions and coul;dm hardly breathe i was given oxygen and to help with the pain, oramorph. I was told that it can also help with breathing. I think it helps mainy because it relaxes you so you dont panic which may make breathing worse??
Ask about it, anythings worth a try. x
Abney, I'm doing good. I work PT bc I need the socialization and income. I work at our local senior center with early stage alzheimers clients and others who just seem lost and don't join in much. My job is to try to get them engaged. The senior center is a place for active adults to meet up. It's not a nursing home or day care. They come to exercise, play cards, dance, etc. Three days a week for 4 hours is all I can handle! I rest up on my days off. I couldn't handle full time!
Abney, I hope my situation can give you some hope. Awhile after that problem my oncologist told me he thought that incidence was the end for me! That was 5 years ago. I wish I could promise you the same, but all I can and do is give you some hope and maybe some will to hang in there! FF
you really went through it:( they started me for a few days on the tablets to reduce heart rate but my respitory consultant did not agree with it as he felt it gave a false reading and the whole point was to see what was going on. So they have preferred to just go with it. He suspects I may have some inflammation too so has taken a sample of my spool. Today when I went for chemo they were just about to check heart rate and blood pressure as soon as they brought me into the treatment room but I said give me 10 minutes just to catch my breath and calm down! I think I get very anxious as soon as I go into the room and then I'm talking and getting out of breath so they need to think about that too! It helped a bit as the heart rate went down to 118! Chemo itself was fine and went relatively quickly. I felt very tired after and had nap but I was also very jittery from the steroids!! Next week is my week off so very pleased I've managed two weeks!!
How are you doing? Thank you again for sharing your experience it really is interesting to hear and I see some similarities. Sending you a big hug!
Lots of love xxxx
Hi Funnyface....wheres all these long words. sprouted from lol xx
Abney, Can they put you in a drug to slow your heart rate. I had a problem few years back. I had to have some tumors shrunk with radiation bc they had closed had a almost closed off my brohncus. My right lung was almost completely collapsed so they did radiation in hopes of shrinking tumor and opening the airway. I got pneumonitis from the radiation. This means your lungs become inflamed. All if this caused O2 levels to lower and heart to go crazy. I was out on my school bus. I had to have them bring me a driver and hubby came and got me. I landed in the hospital! I was put on metropolol to lower heart rate. I just got off of this drug. My heart rate is still high runs around 110. They said if it gets up to 125 they want me back on it. I'm off of O2 bc the lung triangilate. I kept using the incentive spectrometer to exercise my lungs. Pulmonologist and oncologist said it wouldn't help. I read on line that it could help reinflate my lung. Respiratory therapist said it could too, plus helo keep pneumonia away. My lung triangilate!! I wonder if an incentive spirometer would help with your fluid? Google it and ask respiratory therapist. It can't hurt. Good luck!, FF
im hoping that things are going a bit better for you now?
Yes keep plugging onwards.....we are all here for you.
love and hugs,
not being able to catch your breath, plus a rapid heart beat is pretty awful xxx something out of a horror movie no less xx poor Abney, so sorry you are going though it.
Everything is now crossed at this end (even my absent eyebrows!......or they would be if they hadnt fallen out along with my hair!) yes all crossed to pray that the chemo helps to buck you up xx
if the nurses dont appear, to drain...then. Do get hubby to call them at least by early afternoon, in case they accidentally missed you out! Also do keep drinking water......to flush out any bugs.
love and hugs xx
Thank you my lovely friends for all the well wishes. You guys give me so much strength and although sad to hear you have also suffered with similar issues reassuring I'm not alone and can hopefully get through this! Well had another blip on Thursday when I went to the Cardiologist. Saw a specialist nurse who took one look at me struggling to breath and a heart rate of 157 - phoned the consultant (who I thought I was meant to be seeing) and he decided to admit me again! 4 hours in A&e although a bed had been found for me on the Cardic ward- loads of pointless questions which just wound me up! Ended up two nights in. They did another chest X-ray and echo scan. Nothing had changed apart from the fact the fluid on lungs had reduced! They can't do anything about the fluid on the heart as it's not enough and more dangerous to tackle it. When I saw my respitory consultant who I love and really has my back he said I want you home not in here. You are in the middle of chemo and shouldn't be here!!! So now my steroids have been upped hoping that will help with breathing and cough. Nurses will continue to come and drain - although must have been a mix up today as no one showed! I've spent all day in bed- my lovely hubby has been waiting on me like a princess! i'm just relived they not cancelling chemo as that's what I need!
Anyway enough about me how are you all doing? Lollymum how did you get on on Friday? Hope you are feeling ok.
Sending lots of love xxxx
Abney and Lollymum....sorry to hear you are both having a rough time.
I had pleral effusions and it was horrendous. The second attempt at pleurodesis seems to have worked (up to now) and aslo the carboplatin chemo i had straight after. My lungs will never be perfect again and i have had progression since but i am so much better so please keep plugging away.
I too was very apprehensive when someone suggested i go to or local hospice...to me, that was the end of it and they were preparing me for the end. However it wasnt really like that at all. I didnt get asked about end of life but i'm sure they'll be led by you and what you want to discuss/have help with. I remember when i was in hospital with pleural effusions (had also had a lung clot the year before) the Clinical Nurse Specialist started to talk about my prognosis, saying things like whether its 2 months or 20 .......It terrified me. As you say, we all know where this is going and for most of us far too early in our lives, but i just didnt want to face it. Try and gather your strength andkeep pushing on, i'm sure when treatment kicks in you will find yourselves in a better place. We are always here for you.xx
Also, welcome Moff. xx
Moff, I just love the modification you made to lollymum's name....sounds even nicer...not sure she noticed thoxx
i just love these freudian slips when they occurxx
Lollymum, Hope that port was placed today, so you can get underway with chemo! FF
Abney, You go girl!! You got this!! FF
Well done Abney,
as Moff says...you are one brave lady....seems to have been never ending since you arrived...if my memory serves me right?
well tomorrow im on day 1 of , cant be sure but I think, cycle 14 of Eribulin.
Abney, one very strange thing I will share with you, is that in the realm of pre meds....everyone seems to be offered something different for this drug. i was initially offered antisickness drug, which I dont have now....others were offered a steroid, you mentioned piriton !
Well Abney, hope you are sickness free, like me. As you know....We all wish you an excellent result on Eribulin.....absolutely no reason why you shouldnt have one, so hang in there.
am certain part of the 'heart' playing up, would have been anxiety....you should have seen me freaking out when last year, I heard I needed i/v again!
Never mind Abney, have a very good rest now, you deserve it. Yes, hope you join the other thread....loads of helpful info and a nice comfy bench to stretch out on...weve all budged up to give you some spacexxx
dear lollybum and Abney
I am new to the forum and was just popping by and read your posts, I dont have much to offer but I wanted to send you both a huge hug and lots of hope for your treatments and to say what brave, brave ladies you are. I hope you are both surrounded by those who love you.
you are in my thoughts
Lollymum and Abney, I wish I could take some of your worry away! It is so hard watching you both fight through this! I do understand that fight! Have had a couple of big scares with this too! I'm praying for you both to get turned in a better direction quickly! Hate grandmaster stuff! I was also told by oncologist to quit searching! Lol hubby threatened to take my computer away! That was when I decided to out smart him and get a smart phone! Plus guess he forgot I work and can Google there! Hugs to both of you! FF
Hi, Lovely ABNEY,
here is your passport to the 'Chemo Buddy Needed...Anyone on Eribulin ? '. Thread.
keep your sponge handy, your nose clean, and very best. Best, BEST wishes for an excellent
result on Eribulin xx
I just wanted to send you a huge (gentle) cyber hug for all you're going through. The heart racing must make you feel terrible just in itself so I really hope that they can sort that out for you. I've been told the pacitaxel will take at least 9 - 12 weeks before they'll scan me to see if any mets have shrunk. But it's pants if you're not well enough to have it at the moment. I hope the eribulin works tomorrow to help you feel better soon. I'll think of you while I'm having my bloods done and my port fitted.
I've also been contacted by the palliative care team from the hospice. Made me feel like you - is that it? I'm too scared to phone them back at the moment. Let's get through this week.
Abney, I just saw your post on having fluid in your lungs and draining. I have had fluid in mine a few times, but it has never needed drained. I do know that different times chemo has cleared mine out of there. So let's hope the right drug will do it for you! Are you ER + and HER 2 -? I'm on palbociclib/letrozole and it cleared out my fluid! Good luck! FF
Lollymum, if you only had weeks, there is no way they would be offering chemo as you need to have a fair chance of putting up a fight, it certainly is not for the faint hearted! I am sure Mx is correct and your symptoms will go or lessen once treatment begins.
wishing everyone a good week, Sue xx
Thanks Abney! I remember when I started this journey of Mets. I went about crazy trying to find posts from people with years in this. I needed to know it was possible to live longer than the doctor told me! I went on several sites! Some of the sites aren't around anymore and I don't remember their names. On an American site, I met a woman named Jan. After we chatted for awhile we found out we lived about 1 1/2 hours apart. We used to meet half way for lunch and a afternoon of shopping. Even if we were broke as h**l we decided we had to find something to buy! It was our be good to ourselves day. Jan passed away about 4 years ago. She had 12 years of this. Her mets were in the lymph nodes in her neck and collar bones. On the day of her funeral there was a double rainbow! On this site I met some wonderful crazy ladies! They were Ruth, Marilyn, Jenny, Dot, Amber and Belinda. There were lots more but these ladies I've listed became my friends. I wouldn't have made it this far without them holding my hand! Sadly they have all passed but Ruth. They all had about 8 to 12 years with this. These ladies were my rock!
In the beginning for me it was the day before Thanksgiving when I was told. The day after Thanksgiving we traditionally put up our outside decorations. Well my family went even crazier than the normal crazy. They put out decorations we hadn't used in years. They bought more. I could tell they were all thinking it was my last Christmas. I was inside watching because I was short of breath. This made me feel like Scrooge. I felt like I was being led to the window to watch the Christmas past, present and future all at once. I wasn't allowed to touch or join my family, they weren't mine anymore! It was a horrible feeling. I was living to die. Then when I met all these lovely ladies who had a few years in I started to get hope. One day I just got out of bed and decided, I needed to get a grip and enjoy what I could. I couldn't keep up the way I was going! I look back now and think how much time I wasted on crying for weeks. Thank God I stopped. I hope when I tell my story that maybe even just one person is able to have one last cry, wash their face and start living again. FF
Hi Lollymum, You have been in the hospital too long girl. I see they have your schedule booked up this week. It is such a whirlwind in thebeginning til everything is organized. I'm not much help with liver mets since I have lung mets, but did want to tell you my port is fabulous! Mine was placed in my right chest and has been there since March 2006. I'm so glad I have it! I also wanted to tell you that it may hurt some if they access it soon after its placed. They let mine heal 2 weeks before accessing it. I've seen on here that that they are using them in under a week. I would ask for Emla cream if it it bothers you. It is a numbing cream you put in about 45 minutes before they use your port. Just a little suggestion in case you are uncomfortable. HUGS!! FF
Hi Fi (lollymum)
hypercalcaemia is having too much calcium in the blood...I tried to find what you found...but actually I couldnt find anythng which implied a poorer prognosis.....Obviously a high calcium level needs marked attention....but, the bits I read, referred to cancer and to bone mets as possible causes.....try not to worry....obviously the docs are on your case.xx. This happens to lots of people and you are in the right place.xx
Oh, and Lollymum, yes, when I first heard Id got mets....then I had loads of worrying symptoms. Headaches, back and neck ache, sore throat and panicky feelings....was thinking..what makes them think im fit enough to have chemo?....they ALL went away after my first chemo....obviously they were stress related xx
Hi Lin and Abney, and all the ladies on here.
I agree this is all happening so fast. I was diagnosed on 15th, and since then I've been in hospital with hypercalcimia and feeling ill with the liver mets etc.
I've been having an okay day today, but have now terrified myself. I looked up hypercalcimia and I've read that it is associated with poor prognosis and I may only have weeks. I'm in such a state. I'm due to start chemo on Friday. But this all seems to be running away.
Does anyone have any experience of hypercalcimia (sp?) before starting treatment, and have any positives I can hang on to?
Abney, you and I had our primary in the same year. I really hope you're feeling a bit better. I'm getting headaches too - but I think that's simply anxiety. I'm okay during the day then at night I just lie awake. I hope some of the ladies who've had that drug can help xxx
Hi Sue and Paula...sorry you bothhqve had to join our very select group of ladies with secondary mc.
yes, it is a big shock.isnt it? I, like you felt at crisis point when I was told. After a short while...you will be able to throw yourselvesinto your treatment plan...with Gusto.
seems. We are all resilient and can adapt to our newer staus within a short time xx
hopefully you will feel more enthusiastic and mch more in control...love and hugs, Moijanxx