Hi Nicky, I have not had a bone scan since July 2008 and asked the doctor yesterday if it would be helpful to have one. She said no. She said that nothing had shown up on my CT Scan or last 2 MRI Scans. ( I had one MRI around October and the last one yesterday but this was unusual and only because of the pain problem.
Today Dawn, I feel a little spaced out and think this is more to do with the increased Gabapentin. But I am sticking with it for the moment in the hope that my body will get used to it. When I started morphine way back in the Bronze age (!) I felt like this too. But my body usually feels better after a few days so I am going to persevere. Hope everyone is as well as can be expected. Love Val
Thanks Nicky for sharing that info about your hip - I’ve had similar op already on my arm with a shoulder replacement as humerous nearly fractured - that could be why they don’t want to think about a hip op - I’d really be bionic then… How are you getting on with your leg pin? My shoulder op has restricted my arm movement and I still can’t reach the car steering wheel easiy to drive - am thinking of getting a car modified if I get DLA mobility.
I had no bone scans until I went on a research trial that required one - I’d assumed they knew it was in my bones and did not want to inflict the major radiation that’s part of a bone scan whereas CT scan has much less radiation. Never asked them but I don’t think I want too many bone scans as each one is about a years radiation dose…
Val - hope you start to feel more energetic soon; no doubt the hospital trauma is also taking its toll.
Take care
Fran
Well ladies, I have managed to get all my 3 scans done today instead of one each day, they are great at my hospital. So, now I have two extra days this week and hubby is taking me out for lunch tomorrow to celebrate. I get my results next Friday so I am hoping that we may have something else to celebrate then. I feel well, so …we shall see.
Have a good weekend all, whatever you are doing.
Sue x
That’s great news Sue…glad some hospitals get things right! actually I was seen quickly Today, so I can’t complain.
Let’s hope that you have some really good news on Friday xx
Hi everyone. Sue please let us know your results when you get them next Friday. Great you managed to get all the scans done in one day allowing you more cake eating time!
I am off to France on Saturday for 3 weeks staying in a tent and going to 2 different camp sites. I have spent today packing and unpacking my bag. Does everyone else have this dilemma or is it just me? And I KNOW I have packed far too much but as I was only allowed hand luggage last time I want to make the most of it. I will probably have to take some as as the bag is upstairs and I don’t want my OH to rupture his tendon again and I will have to drive the whole way there!
Reading previous posts. I have had radiotherapy for bone pain in my ribs and my spine. It has removed the pain but it didn’t happen overnight. Took time but it did help. I also got tattoos done so that they know the exact spot they have zapped me.
Keep well girls behave while I am away but I hope to pop in as wi-fi on the sites so I am told. Cyber cuddle if you need one. Hugs, Val
I would just like to thank Alex for her positive response to my enquiry about tumour markers. I have a scan on the 6th June so will find out more about how they are doing then.
I am reaching the end of my chemo (paclitaxel) and may be offered 2 more cycles if the scan shows it is continuing to work. If not, it’s back into the big wide world with femera and pamidrinate.
I thought the diagnosis was scary but now that the treatment is finishing, I feel even more frightened than before! Thank goodness for inspirations like Marilyn who has been living with these secondaries for 7 years; I wish her and everyone on this forum, the very best of health and hope I will last a long while yet too.
Siu
Hello Sui, Just to say my TMs are really quite high at the moment. I don’t know if they are the same TMs as you have. But even although one of my markers is now in the thousands my Oncologist does not think that I need to have chemo just yet. Although TMs are very useful my Oncologist does not go by that alone. When TMs are very useful is when you are having chemo and it indicates if the TMs are redcucing and it really boosted my morale to know that the chemo is actually doing its job. After the first lot of chemo tablets my markers halved, but after that they reduced more slowly but every reduction helped my mental state.
I too am on Femara but take Bondronate instead of the Pamidronate which means I do not need to go near the hospital as often. I did find that I missed the contact with the nurses though. When you visit every month you can ask any questions that crop up. I know what you mean about being apprehensive about coming to the end of your treatment. But having a contact with your BCNurse is very reassuring if anything crops up that concerns you. I was first diagnosed 22 years ago and it is 12 years or more now since I had bone mets diagnosed. So many new drugs and treatments have arrived during this period. May you continue to do well. Please keep in touch. Oh I am not a liver mets person but have an honorary post from the other ladies on here! Val
Hello scottishlass!
My tumour markers were 9000 when I began treatment and are now, as far as I know down to 2000, which still sounds very high compared with others!
I asked the doc about them about 3 weeks ago and she said that they were rather strange indicators and that some people with low markers have a bigger mets than me. Maybe it’s something to do with having mets in the liver where the blood and everything else goes in and out??? Not very scientific but that’s the only way I can make sense of it!
I’ll find out more after the scan and review in early June. What’s Femara like? is it given through a line like chemo or a tablet? I used to take Arimadex every day after primary breast cancer, 3 years on tamoxafin and then the remaining 5 years on Arimadex, then the secondaries turned up!
best wishes to everyone on the forum.
Sui
Hi Sui, Femaa is a tiny tablet that you take every day in the morning. I have not noticed any side effects and have been on it for 16 months now. ( I was on Arimidex and Aromasin prior to that). I have been on this type of tablets for over 12 years in total. Hope it works as well for you. Val
Hi Sui,
I’m also on Femara (Letrozole) and was given it as I was on Arimidex before my mets DX. Femara is generally given to post-menopausal women. I take mine in the evening.
xx
Hi girls, haven’t been on a few days, have been coming to terms with my liver mets diagnosis. I have been taking Femara for about 5 months and now the liver problem has turned up my onc has told me to stop taking it and I am due to sart the tablet form of chemo - Capecitabine. Is anyone else still taking the femara with the chemo? I would rather be having more meds than less! Also just wondered what the side effects are like, I know everyone is different but still would be nice (?) to hear others tales. The worst I have heard is sore hands and feet and possibly diarrhoea. I am going to start the tablets on sunday as I am going to see Take That tomorrow night and can’t possibly have the squits during the concert, now can I???
Hi Wannee - when my liver mets progressed on Arimidex (hormone treatment) I was taken off this and put on Capecitabine. (so do understand the tauma of this decision…) Side effects for me are the hand and feet but no diarrhoea or nausea so not too bad and it certainly feels like it’s working as I’ve less discomfort and more energy (waiting for CT scan results and keeping all fingers crossed). Have a wonderful time at the concert - The Circus is one of my favourite albums but am not sure about things with Robbie returning - but hope it’s still fab. Can fully understand you not wanting to upset that night with new chemo as I’m always nervous with any new treatment and not knowing how I will react…
Keep in touch - I’ve only been on Capecitbine for 7 week so am only just in front of you… but get lots of positives from others who have successfully be on it for a while that really encourage me.
Fran
i am about to start Capecitabine with lapatinib on monday. I have been putting udderly cream on hands and feet in preparation. I have heard from other ladies that this is very effective.
x sarah
Flexinol from chemists has really helped me so I use that on feet and Udderley on hands - wish I’d started before treatments but am now doing ok with them.
Hope your treatment goes well Sarah
Hi everyone,
Good to see this tread has become active again.
Siu, Val’s approach to TM’s is a useful one, I too find it gives me a boost when they are decreasing. In your case your TM’s have reduced by about 70%, this indicates that you are responding well to treatment.
Cromercrab, I often read your posts, sock knitting etc. Were you on herceptin and taxol at one point. If you were on herceptin are you going to continue with this as well as the lapatinib and capcitabine. I am interested as I have HER2 BC and am wondering what options would be available to me when it progresses.
Alex
lapatinib is similar to herceptin. I was on taxol and herceptin at same time. I have one sock syndrome at the moment, I have done one lacy sock and can’t be asked to do the other. lol. I am crocheting a blanket at the moment
x sarah
Hi all, thanks Fran for your comments they perked me up a bit, nice (well, not really but you know what I mean)to hear that there are a few of us in the same boat. Started the capecitabine last night after a few tears (i really must get a grip!!) and have just ordered some Udderly. I will look into the Flexinol. I take 5 tablets every morning and 5 at night, I am positively rattling!! Anyway girls, Take That were AMAZING! If they are appearing at a Stadium near you you must go, it’s the best therapy around I can tell you!! Joanne.
Joanne
Delighted you had a great night out and have taken big steps with the tablets (I have 6 twice a day but am tall and broad…!) |Hoping your feet and hands don’t suffer - not everyone’s do. Mine are struggling today (don’t really want to go for a walk but did do several 90min walks in the Peak District on Sat and Sun so am not complaining too much…) - but only one more day and then I have a week off and they can recover - hurrah!
Take care - and do let us know how you get on - hoping your next scan makes it feel worthwhile
Fran
x
SEVERAL 90 mins walks??? You sound like wonder woman to me, but sounds lovely walking through the Peak District. Hope your week off does you some good, I can’t wait, haven’t even been popping the pills for a week yet and already I need a break! Have been feeling quite sickly and off my food despite taking the anti-sickness, and have been feeling quite tired every now and again, but saying that today I have felt great. Maybe it’s just the sun and sitting in the garden with the kids going mental in the paddling pool thats done it. Anyway, onwards and upwards, its time for my next 5, just keep telling myself they are doing me good.Fingers crossed.
Morning girls
Just back from a couple of nights away in the van just what we needed to celebrate my GOOD NEWS! I have been on Capecitabine and Vinorelbine since last November, scans showed good reduction in January, marginal improvement in March and now STABLE! Hurrah! I feel confident about keeping well now for the rest of this year at least. My options are to continue on Capecitabine (my preference) or try a hormone treatment - didn’t work last time so I am reluctant to go this way as I am only 10% poitive for oestrogen!
So, all you luvvies who are due to start or are taking Capecitabine, I really hope that it works for you too. I have kept well on it and manage lots of long walks and cycle rides between 20 & 30 miles on a regular basis, plus Pilates twice a week! Yes, my feet have been sore now and again but it’s a small price for me to pay in return for stability of my tumours.
Hugs to you all, Sue x