Had latest CT scan results last night. Finished my last chemo (Eribulin) at the start of April and subsequent scan showed relative stability, however in a matter of only a few weeks things have progressed dramatically.
Mets in liver increased and liver swollen. Lung mets also bigger and fluid in lungs. Swelling behind right eye in eye socket (experiencing double vision in this eye for last few weeks), new swelling on brain - right frontal lobe. Bones stable.
Prescribed steroids, high dose, to reduce swelling in brain and liver which is causing considerable discomfort and fluid (had ascetic drain at the end of last week). Start chemo early next week, Doxorubicin weekly. Referral for stereotactic radiotherapy for brain, might not be a candidate with everything else going on.
Worried beyond belief, is this the beginning of the end? I couldn’t actually ask this question of my oncologist yesterday. Had sleeping tablets prescribed for the first time ever, can’t get to sleep then when I do manage it I am waking up worrying and not able to go back to sleep. Also struggling to breathe and get comfortable with the swelling in my abdomen.
Anyone else with this triple whammy? How are you coping?
Hello smartie
I’m so sorry that yr scan wasent good results but you must keep positive and hope that the new chemo regime you are starting next week will help relieve a lot of your problems.
In the meantime …keep in touch with us at any time day or night as there is always someone awake to " keep you company " on the board’s.
I will send you loads of hugs xxxxxx
It is quite natural to feel depressed with the progression of this nasty disease. We know that our disease will show periods of calmness and others of rapid progression. Research does not explain why. But this could be reversed. One of the many factors is to focus on keeping a positive outlook and to fight. There are many other factors such as medication and some others that we know nothing about. So the two factors under our control are our outlook and proper medication. Hang on to these two. You can also discuss with your oncologist clinical trial options. Don’t ask him about survival rates as this is not his call. It’s God’s call.
We are here for you and we fully understand how you feel. We’ve had our ups and downs and will continue to have them. Pls stay on this thread and vent as much as you can. Who else can understand you more than us.
Thanks for replying, it’s so good to have your support, and support from people going through the same thing. I have a wide circle of friends and family but sometimes think they can’t appreciate the situation we find ourselves in.
I did sleep a little better last night so that’s an improvement, even with the steroids!, feel quite breathless this morning, guess some of it might be psychosomatic though. Just trying to take it easy. Going to get in touch with the local hospice too as my Oncologist said they can provide good support and help with tying up the circle of care between GP and specialist team.
I’ll keep in touch and let you know how things progress.
I don’t have experience of your symptoms but I just wanted to give you massive HUGS, and say do make use of your hospice, I’m on a clinical trial and they recommend contacting the local palliative care team as a matter of course because they are the experts in pain relief etc.
Smartie.
We are all here for you …some offer better advice and support …I’m as much as help as a chocolate teapot as I’m not good with medical knowledge !!
It sounds like you have support around you but to be honest the best is here with ladies that understand it all …and the worry and treatments involved.
Please keep posting and if you want to rant, scream or shout …that’s what we are here for.
Loads of hugs xxx:heart:
Smartie, just want to echo everyone elses posts…we really feel for you and really do understand as we have all been there. I have been very breathles recently due to pleural infusion and have got home oxygen…this may help you…best people to ask are either your hospice or macmillan nurse if you have one…even GP can refer you. Also i had oramorph…not only for pain relief but also cos it helps with breathing…again something you may want to pursue. rant and rave as much as you like…we are all here for you. xx
Thanks everyone. I am now in the hospice been admitted for a few days so they can try a few things out & monitor me with an ultrasound scan on Monday hopefully. They think some of the abdominal swelling is in my skin rather than inside the cavity (scan will confirm one way or the other) so they are retrying diuretics but a combination of two different types. I start my chemo on Wednedsay so will go home Tuesday latest. Hoping I sleep better in the raised hospital bed rather than surrounded by 20 pillows at home! Thanks for the Oramorph tip Stresshead I didn’t know it had that advantage. Feeling a bit more positive although still overwhelmed, your support means a lot so thanks again for your thoughts & knowledge xx
Hiya smartie
I think you are in the best place so you get the very best pain relief and treatment with experts that have the best knowledge.
We are all here for you …so any time of day or night we will be supporting you.
Our local hospice here is a fantastic place for help and kindness and I’m sure yours is too. Nothing is too much trouble and they understand all the symptoms you have and can deal with you more than a General doctor or oncologist.
Sending loads of hugs from everyone .
Xxx???
Hi smartie I was referred to local hospice they run a twelve weeks course .they don’t mind if you miss a couple as I have due to holiday and hospital appts. Its the last place I thought id go but theyv been great with advice and I can spk to a Dr there which I have done.also they give reflexology and acupuncture and manicures etc.to pick you up a bit…it can be a lonely illness even with good family’s and friends…so take as much help as you can .love Sharon.xxx
Hiya smartie
Hope u r sat up in your hospital bed with pampering and pain relief. Hope u have your phone/ tablet with you and are keeping in touch with us.
Massive hugs and kisses ???
Thanks for thinking of me. Still here & swollen but feeling in a better place mentally than when I arrived for sure. Scan tomorrow morning to see what’s what, they might increase diuretics if bloods etc are ok as the fluid hasn’t really shifted yet or a drain depending on what they find. Going home Wed morning to start chemo then see how things go. It has been very relaxing & I think having a better few nights sleep has helped enormously, the power of sleep shouldn’t be underestimated.
Hope all you ladies are doing ok. I’ll let you know how it goes xxx
Hiya smartie
Nice to hear from you and it sounds like the hospital are on the ball with all the treatments in place.
I’m sure the new chemo regime will hit you a bit but if its doing its job …then go for it.
Keep in touch with us . I had coffee with Barton and EJ81 yesterday and we did say we hadent heard from you for a few days and hoping medication was making you sleep!!
Enjoy a quiet weekend xxxxxx
Hi Smartie hope you don’t mind me joining in here but I’m a newbie and this might be the first time I can actually help with someone’s questions. You’ve asked about diazepam. My GP has prescribed this for me too. I have some 5mg tablets that I’ve been taking when I start to get really stressy or before tests/scans. I don’t drink alcohol very often but the effect they have on me is similar to if I have a glass of wine- just a calm, relaxed feeling. I understand what you mean about the scanner. I had an MR scan a couple of days ago and I took a couple of half tablets-one about an hour before the scan, then another tablet just before I went in. They really did help stop the racing heart and I just felt quite relaxed, despite having a little claustrophobia. Having a mirror in the scanner was the best thing for me though, so I could see out of the end of the scanner. The diazepam can make you feel a bit woozy if you have more, and I guess everyone reacts differently, so just be careful if you are out and about and please don’t drive whilst taking them. Sending you love. I hope you start to see positive results from your treatment very soon. As I said, I’m a newbie and I haven’t started any chemo yet but if you don’t mind, I’d like to follow your story. Tiger xx
Morning ladies, just thought I’d post a quick update.
Thanks for all your words of wisdom concerning the scan - I made it through without a major meltdown. The Diazepam definitely helped, the radiologists running the scanner were fantastic, very kind & took their time once I explained how I felt. Best of all was that my husband came in with me (I wasn’t aware that he could) but as the MRI is just magnets & not giving off radiation he was able to stay for the entirety of the scan. It made me feel so much safer as my head was secured inside a frame to keep it motionless, which added to the claustrophobia. (I even got a foot massage from hubby!) Took a sleeping tablet last night too so managed nearly 10 hours sleep, a first for a considerable while, feeling a bit spacey today though!
I have been measuring my stomach since I’ve been home & dare I say it, the swelling seems to have reduced a little, I measure in 3 places & the swollen area seems to have dropped a bit lower down my abdomen so has reduced by about an inch under my bust. It’s still v uncomfortable & I am still struggling with my breathing but hopefully the diuretics/chemo are starting to work & things might improve. I am desperate to feel at least a little bit better.
Second chemo tomorrow so hopefully it will improve a bit more and not make me feel worse. Have been trying to move around at home but haven’t been out and about really, might try & go for a stroll at the end of the week if I can manage it.
Just wanted to say thanks to everyone for your advice/help, I wouldn’t have done it without you holding my hand.
Lots of love
Smartie x
Hiya smartie
So glad to hear from you and it sounds like you are turning the corner a bit from last week .
We are all sending you loads of hugs and positive vibes …
Hugs ?
