Hi all, i feel I have to apologise for not posting for ages. The fatigue problem has really hit me and I probably spend more hours asleep than awake these days. Just now the problems I have been having with pain are giving me a break and the medication is keeping it well under control.BUT - and it is a big but - I have been on Kadcyla for 2 years now, after being on herceptin for 10 years, but platelets have really been objecting. After changing to 6-weekly which worked well for a while now my platelets aren't recovering and are stuck at around 75 after ann 8 week break. It came as a bit of a blow when I was told that after 8 weeks off the drug it becomes 'out of licence' and you are not allowed to have it again! Add to that NICE doesn't allow you back on herceptin either. Onc thinks cancer has infiltrated bone marrow - if it is just the kadcyla causing platelet problems they will recover in time. On friday I had an echocardiogram (thank goodness Marsden are switching from MUGA scans to these ECGs), and a full body MRI and on Tuesday I will get the results. I just don't know where I go from here. Onc talked of rechallenging the cancer with one of the chemos I had 14 years ago as I had good results on it. I'm afraid I was norty enough to disagree with him. At that time I had a lot of lymph node action around my collarbone, neck and jawline and the chemo (navelbine) did work on them but as soon as the course finished they started to grow again. It was only when I was then started on herceptin (a very new drug to us in the UK) that my cancer was brought under contorol . So for me to be told there are no drugs that involve herceptin available to me - well I'm sure I dont have to tell any of you how that feels. I have heard since that there is a trial going on (phase 1) SYD985 and this, like Kadcyla, is a combination of herceptin/other drug .I know that some of the members of the facebook Chat Girls group know more about this/are on it. If any of you know more or are taking part I would be interested to hear more.
Hi Carolyn, yes I guess I am a veteran!!!
It's had it's up and downs.
I shall open up more on my next post.
Just wanted to say thank you for the welcome
Hello everyone. I've been reading threads regarding heating allowance. I don't receive these, but as I am now on a low income I receive help through Macmillan cancer care. They have a scheme which offests the charges normally paid by your energy company to an amazing £20 per month, with no limitations on how much energy is used. I hope this service is available to at least some of you and please spread the word. Best wishes, smiles and good cheer from Yvonne (secondary breastfeeding cancer in the bones since 2013)
Carolyn, I want mine back too!!!! I understand the heart burn, on prescription prilosec. When I'm on infusion chemo they give me an IV form of pepcid before the chemo. I was amazed at how much pain I was in from the heart burn.The first time I got it, I had just left the cancer center and had to pull off the road. I called Ross bc I thought I was having a heart attack. I managed to get my self home and realized what it was. The next time I went back to onc, he said why didn't you come back here? We woukd have given you the pepcid IV. I asked him how was I to know there was such a thing as IV pepcid?
Carolyn, I was thinking of you last night and Thursday night! Thursday night hubby made a pan of brownies. I fell asleep in my chair. He woke me up and handed me my dessert surprise. A big chunk of brownie with mint chocolate chip ice cream and chocolate fudge topping! Bye, bye diet!! Last night a friend invited us to a gala she planned for a company she volunteers with. The company collects left over food from restaurants and takes it to soup kitchens to feed the hungry. This gala was at a great Italian restaurant. Food was fabulous! Dessert was either cheese cake or this chocolate layer cake! It was 5 layers of chocolate cake with a chocolate filling and chocolate icing all over it! Goodbye diet again!!! We were invited to go for free too! They had a silent auction so I bought a necklace and bracelet. I'm sure you would have loved all that chocolate!
Truffle_Shuff, They should have explained to you what these areas of high density could mean and what the POA for it is. They left you in the land of confusion, NOT NICE!! GRRRRRRRR!!
Racer, Hope you can get a good giggle out of hubby 's melt down! I always felt bad for my kids if hubby was having a melt down. I wanted to rescue them. If it was me having the melt down, I didn't feel bad!
If you need blood I've always heard that it is instant relief.Hope you feel better quick!
Janette, An outing at Christmas markets sounds like major damage on the wallet!! Enjoy! According to a friend of mine it's not just your birthday day, birthday weekend or birthday week. It's you birthday month!!! J love how she thinks!!! My hubby received this silly stuffed grey hamster for his 50th birthday. It is holding a walker like an old person. It sings a song about birthdays and dances with the walker to the wild song. I play it every morning when we get up and every night when we are going to bed for my birthday month!! He just shakes his head at me! It will be 9 years old in Jan. and going on the original batteries. Happy Birthday!!!
calmed down now, no more energy left for worry . I know I will get best treatment ,and it is very small volume ,so fingers crossed, Enjoy all the shoppin , eating chocs and Telly . Im snugged in and chocs and Prossecco will be out later .
Thank you for support everyone xx
Hello Truffle Shuffle
Thats why we all get anxious over scan results but try not to panic yet and if there is any further problems trust your oncologist to prescribe the very best treatment plan for you. xxx
Well just been xmas shopping online and doing ok with things now but I just cant help sneaking a few things in for me as well so the shopping costs twice as much !! Im also munching on a family bag of chocolate raisons too ( well the raisons are one or two of my five a day )
A glass of vino might be involved too when watching strictly and X factor tonight. Does anyone else really love the new John Lewis ad like I do ?? My sons boxer looks just like Buster and no doubt he will be getting a trampoline from Santa to compliment his paddling pool/ ball pool as hes a very pampered pooch !! Ha ha.
Lol racer, let hubby have melt down, you just concentrate on getting to feel better. I'll be watching Strictly, but have no chocs to munch unlike Carolyn
Oh Truffle stuff, I hate it when Oncs leave us up in the air. I hope the MRI comes through quickly and you can get proper information. I haven't got liver involvement, just bones, so can't help on that front. I do know though that there can be other reasons besides cancer that your liver might look different, fatty liver being one for example.The MRI should give a much clearer picture. Let us know when you hear anything. I know it's hard to try to put it to the back of your mind but try to do nice things to distract your brain from dwelling, worrying is exhausting and won't change anything so try to hope for the best whilst keeping a little back to help you prepare if results are not what we want. We are here for you, sending a gentle hug xx
Had scan results yesterday , and bone treatments seem to be working, all stable , and alkaline phos down dramatically....... then the However came , we saw a few irragularites on liver , Ahhhhhhh, they think secondaries , said they were slow growing , ? how can they tell from the scan???? . Adn if yes they will still continue with my bone treatment anyway ???? and out they walkedd, Had meltdown at home , now waiting MRI liver scan . Can anyone give me any their experiences with this area .
Scan read "ares of high density on liver" ?
Keep well , keep warm xx
Oh Racer I'm sorry to hear that. Hope they deal with you quickly, get results fast tracked and enable you to get some answers and know how they will tret you if it is an infection. If you need a transfusion itmight take few hours but I'm told iy makes you feel better quite quickly. Fingers crossed it's easily dealt with and you are back home feeling brightr shortly xx
Racer, Smart girl calling your onc. I know sometimes we hate to call bc we are afraid of another negative answer. We really do need to call though, so problems can get taken care of quickly. Glad your blood work was good. I have to need a little notebook to keep track of everyone. I can't remember what treatment everyone is on, etc. I have to look back through messages sometimes to find it. Darn chemo brain!! I'm going to ask you what are you taking? Also how old are your children? BTW besides my jammies I have 2 exercise outfits that are comfy. They aren't yoga pants. They are a very light weight. soft stretchy comfy material with a very soft elastic waist. No pressure from the elastic. My daughter bought them for me. I also like them fir when I go for scans. No metal, so I don't need to change cloths. On days when I didn't feel good, I ate mashed potatoes. My hubby would make them a wee bit to the thin side. I bought a big box of instant to have on hand. I was too tired to make real ones and didn't want to ask hubby to make them every day. I did well with soups too. Take care!
Hi Bernie, sorry about the worry. Youve done all the right things and you sound very positive and practical.
Hopefully things will settle down and you can feel more confident about things. I had a big scare inJune, when my markers went up very high, a change of treatment has sent them plummetting down. Letrozole is very effective and hopefully it will work for you.
do keep us posted as we are all here for you, love Moijanxx
Hello racer, sorry to read you aren't feeling too good at the moment. Ring your Onc if you don't improve soon (I'm sure everyone else has already told you this!).
Good wishes, and I hope you feel better soon.
Hello bonariensis, thanks very much. Probably should have posted in the Scanxiety thread really, but as I'm not actually anxious about the scan itself, I will save my jitters for the results bit!
So sorry to hear you have slight progression in liver. Hope biopsy goes well and not to painful for you..
Regarding myself I am still on the same treatment at the moment but think it might be changing in the near future. Had my 3 monthly scan yesterday so now it is the waiting game. Normally takes at least 3 weeks for results.
I do read forum most days to see how everyone is getting on. Great news to Natalie to be stable mable.
To everyone else sending cyber hugs hoping all treatments is going well. Linda
Hi Racer, Pamper yourself. Curl up with a blanket, in your favorite comfortable outfit. Mine is a big old over sized men's hoodie pullover grey sweat shirt, over top of a pair of PJ's. I've been known to wake up take a shower and pug fresh jammies on and my hoodie. I live out in the country in the middle of about 15 acres of woods with a long driveway. I can run and throw on jeans quick. Do you think your tummy hurts from SE or nerves? Maybe you picked up a little virus. Hope it's just a quick bug and you feel better soon.FF
Good wishes for your scan on Friday. hope the results come sooner rather than later and lots of hugs for the waiting period, B xx
Thanks, Carolyn! Don't mind the scan itself (although not fond of the warm, "have I wet myself?" feeling when they inject the iodine!), as everyone else, I worry about the results appointment. Actually, I may not have to wait as long as I thought, as I have asked for copies of all reports to be sent to me as well. Not sure, though, if they will do that BEFORE you have had your Onc appointment. I'll have to ask on Thursday.
Hope everyone else is doing OK (Sharon, hope you are feeling more comfortable and are still being pampered!).
hi ladies, thought i had posted on hee recently but cant find it...i'm going bonkers!! Apologies if i have posrted somewhere else in error.
janette...fantastic news on being stable!! i have denosumab every 6 weeks but that was to fit around my 3 weekly chemo to save an extra visit. Seem to be ok with that at the moment as last scan showed stable bones.
Sharon, glad to here you are happy at the hsopice and they are doing nice things for you. You really are in the best place and they'll soon have yo up and running.
Bernie, whenever i have a scan i always ask the chemo nurses if they will do it for me as they are the only ones who seem to be able to cope with my non existent collapswd veins...maybe worth an ask??
Fantastic news that no spread to organs..so pleased for you. I have scans at the moment every three months.
Nicky, sorry to hear about slight progression...i think you have done the right thing in having another biopsy...so many times we hear of people having a change in status which otherwise may have not been picked up. glad to know there is also a plan for you in the pipeline.
Interesting to pick up on the thread about heating allowance..that is something that has been concerning me...neither of us are working and the heating is now on a lot more than it used to be..i think i'll ring and check though after what Babsy has said it may prove to be a waste of time....will let you know.
Love to all. xx
I've just rung up my energy supplier you also need to be receiving one of a choice of benefits as well as DLA so I don't qualify as I have a teacher's pension ☹️
I looked at the link B sent it would seem that this heating discount is automatic if you receive pension credit ? I'm going to look a bit more as I don't get pension credits ..it's always a minefield these things.
Glad u had a good weekend ..I had a
Glass of wine too last night ..got a stinking headache this morning !
Now understand why old people go away to the sunshine for winter months . Sure this colder weather is making me ache more !!!
Hello JulieD, I'm with you - I like to see all scan and appointment reports. I want to know what is going on - I have found that you learn much more, even from the reports your Onc or Onc Registrar puts in their report than they tell you at the actual appointment! I am due a CT scan on Friday (day after my Onc appointment, unfortunately, so will have to wait at least 3 weeks for the results, if not 6! (I don't usually have an Onc appointment every visit - usually they alternate three weekly with just a Chemo Ward visit).
I currently have scans every 6 months, at the beginning it was every 3 months but as I've been stable was moved to 6. My Onc has actually been trying to tak me into yearly scans but I'm not comfortable with that.
You need to check with your energy supplier about the Warm Home Discount - not all of them are in the scheme, mine isn't
I always get my Onc to send me a printout of the CT report, mind you I have to chase them sometimes, I like to see what the reports say and ask questions about anything I'm not sure about or that seems new/different. It doesn't suit everyone but I like having information.Good luck Tuesday Bernie.
Avrelia, good to hear chemo has been manageable, hope you get to have a good break.
At my last onc appt I asked her for a print out of my bone scans which she duly printed off. For me, it was about trying to see what she was talking about. So even though I had progression after my spectacular regression I could see that the cancer still wasn't as bad as at the beginning and that gave me hope. I alternate a bone and CT scan every six months but I am going to ask for MRI s to replace CT scans. The radiologist explained that it shows soft tissue/ organ invasion just in a different way. This has now been backed up after my visit to A & E with a suspected spinal cord compression. The doctor ordered an X-ray but the radiologist told me that with each CT scan you receive the equivalent if 3 years background radiation. No wonder I'm glowing !!!! I just figure I need to help my body not compromise it further. She refused to do an X-ray.
I'm going to see a qualified nutritionist/ naturopath on Tuesday so I'll let you know how that goes. Also booked into see hospice counsellor just cos I feel that I need to ha ha.