Hi Alex,
sorry I did not see this post last night hope Katybelu is feeling better. If not please get her to ring the chemo unit, mine would ask you to go in and get checked over others may say ring g.p. chemo has never made me jaundiced so I would be concerned about it. The tiredness and digestive problems are common but please if you have not rung the chemo unit please do now.
Hope she is soon feeling better.
Love Debsxxx
thanks Debs.
Going to see J now. BCN sent out GP again today and he says symptoms are caused by inflamed liver pressing on other organs. BCN is going to speak to onc at conference tomorrow too. Am keeping close eye on her this week as she is on her own, and if she gets any worse I will call medics.
Jackie is due to have a bunch of treatment this week and we are supposed to be going away to Skye on Saturday. Keeping everything crossed she will be able to come and will be well enough to tolerate the treatment.
Can you tell me how long after chemo should liver respond?
thanks loads
alex
xx
Hi Alex,
I can only say what has happened to me. With chemo we are all so different I have just had 5 taxol and I was getting steadily worse I have been on taxol & avastin for 18 months I had a break from tax and had just gone back o it. This time I could tell chemo was not working as I was not feeling any better. My liver had shrunk and gone back up to where it should be so it is squashing my other organs. In the past after 6 taxol I could tell things were improving. At the moment I am nuetrepenic so I hope I improve and can start another chemo a.s.a.p. Did the g.p. do bloods? Sorry I can’t be more help, if she has a temperature ring emergency straight away.
Love Debsxxx
Hi Debs
Sorry to hear you have been going through such a rotten time lately. I often read your posts and always find them helpful and informative. You really deserve a break. I am sending out healing thoughts to you (well it can’t hurt eh!) and hope you feel better very soon.
The bcn got the local GP to visit Jackie again today. After consult with the hospital docs he has written a script for steroids. They weren’t ready to be picked up when I left J but she’ll get started on them tomorrow morning. She’s getting blood taken at the local health centre tomorrow and is in line (hopefully) for bone chemo on Weds, Paxol on Thurs and herceptin on Friday. What a rotten thing this illness is - you can imagine how shocked we were when I was dx recently. So far I am very fortunate, had surgery and on tamoxifen. Awaiting rads.
alex
xxxx
Well ladies,
Looks like I have finished the chemo. Due to have herceptin only from tomorrow. I am aware that herceptin by itself can still have some side effects. Has anyone suffered any?
Also, tomorrow will be last treatment at hospital as will be using healthcare at home service from next cycle. It sounds odd, but its being done through private insurance and apparently its cheaper to pay for one nurse to come out to my house than to have it in the hospital setting!
Will have consultation with oncologist tomorrow so should have more details about last ct scan other than it was ‘good’.
Have to sign off now as have early start tomorrow.
Best wishes to everyone.
Snoogle
x
That does indeed sound good, Snoogle. Hope the consultation with the onc has confirmed the details and that the ct scan showed lots of improvement. Can’t help with herceptin side effects as am HER2 -ve.
Sorry to hear Katybelu is having such a rough time of it, Alex - I remember her post when she found out about her secondary dx. As Debs says, how quickly one responds to chemo varies hugely. Hope the steroids help her though.
Still keeping my fingers crossed for you, Debs - when are they testing your bloods again?
As for me, I am slowly improving. I feel very tired still but David, quite rightly, points out I am doing more each day even if I end up feeling whacked at the end of it. Scan now booked for the 20th AUgust which is the day after we come back from holiday.
Have too much time to think really at the moment - not enough energy to tackle lots of other things that I should or want to do. Either that or I spend too much time on line buying things I don’t really need! WHat happened to the gormless shopping thread?!
Love to all Kay xx
Hi everyone,
One of the best vein hunters has left our chemo unit to do the nursing at your home seems like a good idea to me. Not everyone can afford to spend all day hanging around the hospital so hope it all goes well for you snoogle.
Really hope Katybelu is feeling better.
Kay have a wonderful holiday and praying for you for good scan results. I think a little progress is good progress. The gormless shop thread has gone off the radar. When I can I fully intend to shop till I drop. If I were to try at the moment the drop would come before the shop!
Just got back from clinic had a good going over again and IF(fingers crossed)bloods are o.k. I will start vinorelbine on Friday. I did not take the steroids I was given but I will start them tomorrow.
Hope everyone is doing o.k. weather here has been o.k.ish. Holiday makers all parading in shorts. Locals do all year round!
Love Debsxxx
Debs - pulled up gormless thread just for you - glad to see you posting.
hi all,
snoogle, thanks for advice on life insurance, my husband looked into it and thinks that you have to have less than 12 months? which i don’t want to attempt fate!!! my onc on holiday at min but will ask his opinion! as for DLA haven’t a clue what that is? please tell? i’m hopeless at claiming things not sure what i can?
well done finishing chemo. i have had herceptin since jan with no side effects, should be a breeze compared to chemo! good luck! x
Snoogle,
That sounds great news…
one of my friends Justy has had herceptin now for three years.
I don’t think she has any side effects.
I have healthcare at home and it is much nicer.
Yes it is cheeper sounds mad dosn’t it I think the company that makes the drug pays for it.
Kay,
Pleased to here your doing well, its so easy to get carried away when you start to feel a bit better.
I never know I have done to much until its to late, I do hope your wiser than myself.
Might have to join in the gormless thread…
having a shopping day planned tomorrow!!!
Debs,
I have a real love hate relationship with my steriods but they have really made a difference to how I feel and what I can do now.
I hope they soon kick in for you and fingers crossed for Friday.
Best wishes to you all
Tess
Hi All
Snoogle, I have been on herceptin now for about nearly 2years now. Not had any side affects really, just tired, but then that is probably down to my two little ones too, running me ragged. And so far it has been working ok for me.
Gossie, I got my critical life insurance paid out a couple of months after I was diagnosed with bc and secondary liver mets at the same time. I got over £140K basically and we have paid the majority of our mortgage with some still on fixed rate. I didnt like that fact that it was supposed to be cos only had 6 months left, but here I am 2 years on from my dx. So good luck. I also got the DLA (disability living allowance) at the higher rate from the start, and my blue badge and also my car tax paid for. My onc filled out the DS1500 form (or something like that) and it all went through very smoothly. so much so, I had the money in my account before the paperwork arrived!!!
Kay I hope you have a fantastic holiday and make sure you dont overdo it. I am also going on holiday soon - 14th August for 2 weeks to Turkey. So wont be around for your results, but will be keeping everything crossed for you.
I hope that everyone else is ok. Debs, hope you are doing OK too.
Take care all
Love
Dawn
xxx
Hi Ladies,
Time for some good news around here.
Saw my oncologist this morning. He confirmed that chemo has now finished. HOwever, he said that latest ct scan revealed that tumours had been shrunk as much as we could have hoped for and that further chemo would not reap much benefit in relation to the toxicity I would suffer. Or something like that! I also found out that there was more spread in my spine than the original unconfirmed suspicious area. Apparently they were found in the latest scan because the areas are denser when they are healing. Although Oncologist said they were very small and it was good news that they were healing. I think I will stick with the calcium and vit d tablets!
I am also er positive 4 out of 8 and he is going to start me on a daily oestrogen blocking drug and a three monthly injection to stop my ovaries producing oestrogen. So my periods definitely won’t be returning! I have to go to my gp next week to get prescription as Onc said letter should be with gp by Friday.
Onc will make referral letter to healthcare at home and I should hear from them soon to sort out date for them to do next herceptin cycle.
Gossie, re the life insurance, better to do this as soon as you can near diagnosis. We claimed on critical illness straight away and this paid out almost immediately. In hindsight we should have claimed on life insurance straight away too. This was with the same company and we could have done it all on one form. We left it about a month and it was less straightforward. Different types of policy I know. Even though they had report from onc stating 12 months criteria had been met they didn’t agree to pay up until we told them gp had given us form DS1500, which stated the 6 month life expectancy. Even then it was about a week or so after telephone conversation before they rang to confirm payout. You have paid for this insurance and if the policy entitles you to claim in this situation then go for it. They can always say no, but you can always challenge them.
Don’t feel you are tempting fate. There are lots of ladies here who have been around much longer than 12 months. It will be 6 months after diagnosis of secondary on 17th September, so I guess I am a fair newby still.
Best wishes to all, have a fab holiday Kay.
Tess, I am so glad no more steroids! I may lose some weight now!
Snoogle
x
great news snoggle 
am curious about the daily oestrogen blocker and 3 monthly injections what are they?
R x
Hi Zippy.
The daily oestrogen blocker is Letrozole, not sure of the name of the injections. The blocker is to block oestrogen from being received by the cancer cells. the injection to stop my bodies natural production of oestrogen, so basically will continue the temporary menopause caused by chemo.
Has anyone else used these drugs? There are some possible side effects so would be interested to find out if anyone has suffered any.
Snoogle
x
Its gone very quiet around here. Hope everyone is ok!
Snoogle
x
Hi snoogle
Im more than ok, Im getting married tomorrow! Cant wait and it looks like the sun might be shining too! xx
Oh KerryRose,
I hope you have a fantastic day. No wonder you’ve been quiet, you must have been so busy.
Getting Married. Wow!
All the best to you and your spouse to be.
Lots of love
Snoogle
x
Congratulations have a wonderful day.
Love Debsxxx
Snoogle
Instead of all those injections and possible side effects why don’t you have an oophorectomy? It’s all done as a day case via keyhole surgery - usually. Seems a simple solution really.
D
Hi All,
Sorry I’ve been contributing to the quietness around here - just back from hols. Kerry-Rose hope you had an absolutely fabulous and happy and memorable day. Tell us all about it.
Snoogle I’m glad to hear your good news - that sounds like a really good response to the chemo. I wonder why you’re being given letrozole and not tamoxifen? Does anyone know the difference?
I’m glad that people are getting away for holidays. Kay, have a great time,aand I hope you have the energy to at least potter about and see the scenery/enjoy the pub lunches. Ripley, glad you had a good one - hope the chemo’s not treating you too badly. KatieP, did you mention an upcoming holiday? Sorry - I know I only read it 5 mins ago but it’s all gone out of my head already!
We had a lovely fortnight in the Lake District. All three kids came (including 19-yr-old son just back from Oz) and they managed not to moan about the walking too much. I did a rota so 2 people got up and got breakfast and made the packed lunch, and 2 others cooked dinner. It really worked well. They enjoyed revelling in it when it was their day to do nothing, and I managed to avoid having a major explosive rant on about day 3, like usual, because I was expected to do everything! We managed to get all five of us up and over Striding Edge on Helvellyn! Took us 7 and a half hours, and I was always the slowest(it made a change for my youngest not to be the one lagging behind)but we did it - what an achievement. Don’t know if it’s the herceptin or tamoxifen, or throwback to the chemo, but I just can’t seem to get enough oxygen round my body when walking uphill.
We had long leisurely breakfasts, and sat by the lake in the sun reading our books, as well as going on boats on the lake and visiting a local friend. A real break from it all.
Well, I’ve been rambling too long. Love to everyone
Jacquie xxx