Posted: Wed Jun 04, 2008 10:48 am Post subject: thought original diagnosis for BC was a good one - was wrong
Diagnosised with breast cancer feb 2007 - 1 lymph node affected. 6 mths chemo - no problems there then 15 sessions of radiotherapy - my job done, very few problems. THEN the bubble burts for a second time - look down to March 28th. got the results back in. havn’t been on the site as 3 weeks in hospital, firsty told its in the back bones - 2 weeks total bed rest - not allowed to move!!! then the ct scan results, i so expected them to be perfect, whoops not my lucky day, cancer in the lungs, liver and the chest lymph nodes. weekly chemo at the moment. i am soooo tired, is this normal. I have very shaky legs and have to use a stair lift, crutch and wheelchair if going far or shopping - will this period last long, can i hurry it up. what can i do to get some kind of fitness there or am i expecting too much. anyone gone throught this period and managed to get out the other side. having hickman in on monday as cant find veins
Hi, Kelyn
Sorry to hear your latest news. You must be gutted. Only thing I can suggest is you take it one day at a time, or half a day or an hour at a time. But remember that things WILL get better as treatment progresses. Just go with the flow, let others help you, and rant on here as and when you need to.
Best wishes.
Maureen xx
Hi Kelyn
Have just replied to you on another site and hope you soon get some replies from women who have been and are in the same position as you with diagnosis of mets in several sites at the same time. I do know women who have used a wheelchair for a while and then have been able to dispense with it as effects of treatment have improved symptoms.
You are bound to be tired right now…you’ve had a horrible shock plus hopsitlaisation and weekly chmo will be taking its toll. Are you on taxol? That’s often given weekly?
Have you got good support around you…both personal and professional…Macmillan nurses are often brilliant in sorting out practical issues as well as supporting you through the awful emotional stuff.
very best wishes
Jane
yes, on weekly taxol and i seem to be managing well but so tired then i have the odd few days when i have energy but still wobbly legs. thank goodness for fantastic hubby and 2 girls 25 and 27 so very good support
Don’t forget that you are probably eligible (especially if you are on Disability Living Allowance) to a blue badge - that will help you to get around a bit more easily.
Blondie
Hi Kelyn
My secondary diagnosis also came as a bolt from the proverbial as it was 3 years after my primary diagnosis and I was supposed to have a good prognosis. I think that it goes to prove what many on this site have said is that the only predictable thing about this diease is it’s unpredictability.
I’ve also had a recent scan which was not good showing widesread progression so I’m back on chemo. I’m sorry that you are feeling so poorly at the moment and hope that you get the treatment to keep things under control. That should make things much more manageable
Best Wishes Kathryn
Hi Kelyn
I have mets in all of the same places as you except the bones and was diagnosed at first diagnosis.
I was lucky in that the first lot of Chemo FEC managed to reduce a lot of my tumours.
You just need to give the treatment a bit of time to start working and hopefully you will start to feel better soon.
Try not to do too much (I know its hard) but let everyone look after you for a while
love CAroline
i have secondaries in my chest wall, liver and lungs - I feel okay. On taxotere at the moment but managing to work and live a with quite a good quality of life. Although I too suffer from days when I am extremely tired (I have 2 girls aged 9 & 6 as well, as do many people with secondaries). You will feel better it’s just being patient and lwtting the treatment do it’s job.
Best wishes
Diane
xx
Hi Kelyn
I have been off taxol for 3 weeks and only just feel more like me. I had really wobbly legs could not walk up and down the stairs no stair lift used my hubby Ian he walked infront of me mind you if I had fallen we would most likely both be in hospital now. Today I spent an hour in the garden sorted weeds etc it felt like a massive achievement while on taxol 2 days a week were spent in chemo coma. Tell your onc I am sue he will say its just the chemo. Take care and rest loads.
Love Debsxxx
Hi Kelyn,
Sorry to hear about your cr*ppy experiences. Must have been a terrible shock for you, and that’s hard to deal with when you’re stuck in hospital. And now feeling so drained on the chemo. Can only say hang in there sister - things really ought to improve once the treatment starts to take effect.
It’s so hard with kids too - you just want to keep everything ‘normal’ for them, as much as you can.
Lean on everybody and pick and choose the things you want to do.
love Jacquie
Hi Kelyn,
What awful news for you, I was diagnosed in March 2007 and remember your name and posts from that time and last summer as we were having chemo at the same time. As I was her2 positive I havent even finished treatment yet, so far I dont have secondaries (not to my knowledge anyway) and therefore I have no experience of your treatment. I suppose I just wanted to say hello again and wish you all the best, this forum really is fantastic and Im sure you will find all the support and love again that you had last year.
Take care,
Polly x
I am writing on behalf of my sister Kelyn. She is back in hospital, and things are not looking good, the doctors have decided to stop treatment. After her chemo on Friday Kelyn as normal was tired and this lasted all weekend, but on the Monday, she was talking and making no sense. Her husband called the doctor out, who then sent her in to hospital. They say that she has got an infection, but the chemo apparently has not done anything the cancer in the lungs has gone worse after looking at the xray. They doe a CT scan of the brain and that come back all clear. What I don’t understand yesterday we saw the doctor and he said he thinks it would be in her interest that she has a blood transfusion, which she had yesterday, and they are going to do a CT scan today to see how much is infection and how much is cancer. She was really ill yesterday, but my daughter just phoned me now and said she was a lot brighter, even spoke to her for a few mins. I just don’t understand this all, but will keep you all updated. I know my sister said she is on another forum do any of you know which one that is, as she would like me to tell the ones on there the position.
Thanks
Sue
Hello Sue - Thanks for letting us know how Kelyn is, you must be in turmoil at the moment. I’m sorry, I don’t know about the other forum, but perhaps someone else will. Everything is very confusing at the moment - probably especially the fact that you have been told that the doctors have stopped treatment, but that they are talking about blood transfusions and still carrying out investigations. Sometimes there comes a stage when the possible benefits of carrying out treatment are outweighed by the inevitable side effects, and it is decided that there is nothing to be gained by continuing a tough regime of chemotherapy etc. This is really about the fine balance between the quality of life, and the length of time that someone may have ahead of them. So although the doctors may have stopped “active” treatment, please be reassured that they will do all they can to make Kelyn feel as well as she possibly can, and will address any problems like anaemia, pain, loss of appetite, infection etc. She won’t be abandoned. I would think it highly probable that they will ask the palliative care team to see Kelyn and they are the absolute experts at improving the quality of someone’s life, even when a cure of the cancer is not possible. Hopefully you will also see them, or perhaps a MacMillan Nurse. This is a time that your whole family needs lots of support and explanations. Please do tell Kelyn that all of us here will be thinking of her, and I do hope that she will feel brighter and more comfortable soon. I am so very sorry that Kelyn, and all those of you who love her, are having to face this dreadful time. Please do let us know how she gets on over the next llittle while, and please do write here if we can support you in any way. Sarah
Hi Sue
Am so sorry to hear about Kelyn and hopefully the doctors will find out what is causing the problems and manage to get her stabilised and comfortable. The other site she is on is bcpals (hopefully the mods wont remove this for you). But if they do I can always copy this there for you, not a problem, or send you a pm.
I hope that you and your family are also coping with this all, as must be hard for you to watch Kelyn go through this.
Please give her my love and hopefully things will improve for her.
Thinking of you all
Love
Dawn
xxx
Hello Sue,
I’m sorry to hear this news about Kelyn and will be thinking of her - I think the site she’s referring to is bc pals which is a private forum - if you can’t access her account on that forum, I can cut and paste your message on there for you and then post back on here all the replies.
Please let me know if you would like me to do this for you.
All the best,
Sally xx
Yes please, if any of you can help by passing the message on I would be very grateful.
I have just come from the hospital; my sister seems to be slightly better today, not so agitated, but only getting a couple of words out of her before she goes back to sleep.
We are a bit up in the air as they told us that we could take her home yesterday but then they decided to give her blood which we were pleased about and also said that they were going to do a CT scan yesterday to find out the true extent of the cancer on the lungs, how much was cancer and how much was infection.
Sorry just heard from the hospital, the top specialist has looked at my sisters x ray, and it is cancer not infection and it has spread even though she is having chemo. They have just told the family that they will just keep her comfortable now. I am off back to the hospital.
Thank you all for your kind words and I will pass it on to my sister. I don’t know if my sister has got any friends that she keeps in touch with and when I ask she gets a bit confused
Sue
Hi Sue,
I am so sorry to hear how poorly Kelyn is and would be grateful if you would pass on my love to her. We were diagnosed at exactly the same time and pretty much had identical treatments. Throughout chemo last year (she was one cycle ahead of me) I called her my guinea pig, and then when she started rads a couple of weeks before me I pestered her to find out what it was all like.
Hearing this news is absolutely gutting, and I am truly devastated for you all.
Please give Kelyn my love and let her know I am thinking of her. I do hope my little guinea pig is feeling much more comfortable very soon.
Take care and thanks for keeping us up to date,
Kelly (princess18)
-x-
Hi Sue,
I have posted your first post for you and will post everyone’s replies on here - I don’t think you’re supposed to give out email addresses on here so you later post may be edited.
Please keep us up to date on Kelyn and give her my best wishes.
Sally xx
Hi Sue
so sorry to hear Kelyn is in hospital I hope that they can offer her some sort of help.
Thinking of you all at this difficult time.
Love Debsxxx