Hi Fiona,
Couldnt believe it when i read your posting, you somehow think this swine flu wont get that far. After all, how often do yu hear of people actually having real flu (apart from men’s colds that is LOL)I am sure yu must be a priority for tamiflu at your GP’s as i think they have to give it people at most risk. Either that or they will give yu the marrow booster.
My son goes to a big school and we had a letter home about what they would do (which i glanced at) in event of outbreak. Probably should find it and have a look.
Theres a saying ‘I might be paranoid but that doesnt mean they’re not out to get me’ Very appropriate here.
All the best
Linda
Hi Ladies,
The Swine Flu seems to have dipped in news coverage recently doesn’t it. Fiona, have you rung your oncology dept for advice? I am sure your son won’t mind being off school a while! 
I know mine wouldn’t. Although they did have an extra two days off last week. That was actually quite nice as half-term had been chemo week and a bit of a wash out for us to do stuff together. We also had a letter home from school some time ago about swine flu, but I am not sure what I did with it. Basic hygiene seemed to be the main issue.
Chemo again next week so making the most of my ‘good’ week.
Take care all,
Snoogle
x
Hi Snoogle, hi all,
Do you know what, it occurred to me reading your posting that i know more people with BC or have had BC than have ever had flu. Kind of puts in perspective. Which one here is the pandemic?
Anyway, still in the grips of major sludge gob, food tastes foul but on plus side keep weighing myself to see how much i’ve lost. I think i need to continue a bit of a diet otherwise will all come back on in days. I really do need to lose some weight and now chemo’s finished, i can think about it (until rads start of course).
My youngest off on field trip next week. First time he has been away alone. He went on another school trip two years ago but i was one of the teachers on it so doesnt count. It will be interesting to see what eldest is like without him. they do argue a lot, well they are boys. He was really grown up and sensible last week when his brother was away when usually he can act a bit babyish. We shall
see. Should have a very quiet house.
OH home today because of tube strike and can hear him loading dishwasher. Dont u love em…
Linda
Hi All,
Gonna have a rant now so hold onto your Hats!!!
Well I’ve kept my son off, The school were ok about it but I don’t think they have any choice. I think most of the kids have been kept off as parents can’t see the point with only excluding the year involved when they all share the same facilities and classrooms, canteen e.c.t. Parents are a bit angry and fed up with the health authorities for their business as usual policy and need to cause as little disruption to the wider community. We are in the grip of a major outbreak here in Glasgow and they have admitted that it is getting increasingly harder to contain it. No blinking wonder!!! Just wait till it starts hitting the elderly and sick!! we already have 3 in intensive care and another in 8 in High dependency… “but they already have underlying medical conditions” so apparenty that’s to be expected!!! apart for one man who went in healthy. Last week they were telling people on Tamiflu to stay at home till the course was finished. I know a boy in college on it and has been told to go in today. His classmate turned up for an exam last Thusday, coughing and sneezing and riddled with flu!! Oh I give up!!!
I spoke to BCN on Monday and she said not to sent my son, she also commented on the lack of information given to health workers regarding this and any info passed along was very “woolly!!” I don’t know about England but here is going to be a disaster!!
Ok rant over!! apologies…!
Hope all you girls are enjoying your good week… I am but I’m keeping away from crowds, public transport, shopping centres ect…
Hugs
Fiona xxxx
hi
U enjoy ur rant and obviously take it back, this particular flu is worrying. Sounds like they need to do what they did in Mexico and close everything down for a few days.
Lets hope they get their act together soon, according to the press they are prepared for this. Doesnt sound like it!!
Sorry wont be going North of border for my hols at any time soon.
Linda
Fiona,
You do right to rant and the swine flu is something we all need to be aware of. In a previous life I did a lot of work re contingency planning for a flu pandemic. One of the health authority planners did put it all into perspective when he said we have to remember that it is flu not the bubonic plague but…we all know that we are very vulnerable at the moment and we would be at risk if we caught it. Hopefully we would all flag up on the system and have priority but as you point out it is the lack of info that is worrying.
I also know that there are robust plans in place for a flu pandemic (the govt was insistent upon it a few years back as it was always a case of ‘when’ not ‘if’) but from you experience it may be a case that the messages are not getting out hence the confusion.
I think you do right to keep battling to find out what the score is and what you should do to look after yourself and your family. I for one would welcome any info you get as, although it has not hit anywhere near as hard south of the border, rest assured it will come back in the winter and we all need to be aware. At the moment I think the best advice is that of hand washing etc. Seems pretty tame advice but it covers a mutitude of things and is not bad advice in general at the moment. Good idea about crowds as well… no need to let this take over our lives but doesn’t harm to be sensible.
Does anyone know how long the imuno suppressant aspects of chemo last? is it the satutory three weeks or are we weakened for some time to come?
Julie xx
Hi Julie,
Isnt it just our red blood cell count that takes time to come back hence breathlessness etc. Although its different for every person, they say around six months before you are back to ‘normal’
When they talk about tamiflu on news they keep saying it would be available to most vulnerable and that is us so like to think if we need it we can just ask. I think i will mention it to onco next week in passing.
linda
Hi Girls,
Well Kept my son off school for a week seeing as they didn’t shut it… He went back today and has been told this evening that a friend he sat with all lunch time today has tested positive for swine flu. He was tested on Friday and got the results tonight…
The Doctor was very good and has put him on Tamiflu straight away. They are not testing for it up here now as too many cases. I am getting chemo tomorrow so have to discuss Tamiflu with onc, but he gave me some anyway to have just in case…
There are so many cases up here now, it’s going to be so hard to avoid it…The doc doesn’t even know how Tamiflu will effect me if I have to take it… don’t think it’s been tested on chemo patients yet!!
Oh well, fingers crossed… who’s all for chemo tomorrow? I’m moving onto FEC…
Love to all
Fiona xx
Hi Fiona,
Sorry to hear about yr news. I have just been trawling internet to see if there is anything about tamiflu and chemo but cant see anything and have put in a few different combos. you would have thought there would be something out there wouldnt you?? I am sure they must have given it to cancer patients somewhere.
I will be very interested to see what yr oncologist says. I hope it all goes well.
All the best
Linda
Hi All,
Next chemo tomorrow. All the best to those joining in with it this week. Here’s to a week of hell! Would raise a glass to you all, but I am off the falling down water!
May not be around for a few days… :-{
Take care all.
Snoogle
x
fiona - will be crossing all for you that its ok…I’m due last tax on thurs…mary x
Good luck Fiona and Snoogle today.
Hope u feel better soon.
all the best
Linda
Hi Everyone,
Have just typed this for another thread so if you don’t mind I will just copy and paste here, with a few amendments.
Just got back from chemo.
Managed to have a reasonable conversation with my oncologist about the level of informaton I need and the level of information he was giving me. He explained things from his side and me from mine. I am going for another ct scan after my next cycle (number 6) and he will request the scanning centre to give me a copy of the first ct scan I had and the scan I have on that day and he will then go over them with me when I next see him after that. Today was the most positive I felt after a consultation with him. Tumour marker coming down a bit helped!
He has decided to wait until he sees results from next scan before making a decision on having 6 or 8 cycles before going on to just herceptin. Trying a different regime with the steroids this time around, but apparently its most likely the carboplatin that is causing me the physical and emotional lows, but he is keeping it at full dosage for as long as I can tolerate it, so hoping the slow drop off with the steroids will help. I didn’t have such bad problems when I was just on taxotere.
Other than that I await the sludgy tongue, nausea, bone ache, the list goes on… well you girls know what I mean.
Hope everyone has a good day.
Snoogle
x
Hi Girls,
Back from hols on the beautiful Isle of Arran. Got caught in the middle of a midgie storm but they obviously don’t like chemo blood. Everyone else got bitten alive and they left me alone. Something else to be happy about!
Fiona, I’d be interested in how you get on with the tamiflu. As you know, I’m not so far from you and a bit worried about going anywhere. I’m in the middle of my most vulnerable few days.
I asked my mate about any limits on how long oncs will prescribe Herceptin and he says in the US it can go on indefinitely as long as the heart isn’t affected but normally they don’t prescribe beyond 5 years because after that they consider the risk of recurrence is reduced.
Hope you are all as well as can be.
Jan
Hi Girls,
Have been sooo sick on FEC. Threw up every hr for 14hrs. Doc came to give me jag yesterday aft which slowed it a bit. Only just managing to take anti sickness pills nothing else. Onc advised me to take tamiflu but as yet haven’t. Side effects are diorhea and vomiting!!! No thanks!!
Nurse coming on Saturday to start me on boosting jags for 7 days. So will likely have all the flu symptoms!! My son is fine so far. No syptoms!
Hope everyone else is doing fine
Love
Fiona xxxx
Hi Fiona,
So sorry you’ve been so sick. I had my last FEC on 4th June and have been lucky. I wasn’t sick once. The steroids seemed to keep it at bay for me but the resulting constipation was almost not worth it! I’ve just taken my last booster jag for this round and have had a bad few days with the bone pain (but it might be that I did too much when I was on Arran as well).
Glad to hear your son is ok so far.
Has anyone else had vein problems on FEC or Tax? My right arm, which has been used for injections, is almost useless at the moment. I can’t straighten it or stretch. I have pain from the hand to elbow and the veins are prominent and swollen. It seems to be getting worse. Should I be worried? I have an appointment with my BC nurse on Monday but wondering if I shouldn’t wait that long to mention it.
Jan
Hi Jan,
Its probably worth calling and asking advice, even for you own peace of mind.
That’s what they are there for.
Snoogle
x
Hi Jan,
After FEC my arm and veins were swollen and sore. The nurse said it was chemo induced phlebitus and it would get better. It did, The taxotere might of been hard on my body but it wasnt on my veins and apart from browning where the needle went in the most there is now no pain in that arm.
Obviously still worth ringing but hopefully its the same as me and it will clear itself up now FEC is finished.
Linda
Thanks Linda and Snoogle.
Reassuring to know there is something temporary that could be causing the symptoms. I’m worried it will get worse and I’ll lose the use of the arm. I can cope with the hair loss, the breast removal and all the other shitty things. The one thing I don’t think I would cope with is permanently losing the ability to drive. It’s my little piece of independence and normality.
I phoned the nurse and she (helpfully) told me they shouldn’t have been using the arm on the same side as the affected breast for chemo. Too late now! 3 down-3 to go.
Hope you are all well today.
Jan
Afternoon ladies,
Just starting to feel a bit more human today. I have lost 3 days and don’t know where they went!!! I’m still feeling sick when i’m due to take more anti sickness tablets, but other than that I’m fine. I’m worried about the constipation though as this is a big problem for me. TAX was fine when I was taking the lactulose but the I wasn’t on the anti sickness tablets for very long!! Think I will have to make the “go cake” on the chemo thread.
Jan can’t believe you were getting chemo in the “bad” arm. They’re always very careful at making sure which arm is which when I go? They don’t even take blood pressure from bad arm!! Hope it gets better soon. Be sure to tell them when you go!!
I’ve got the nurse coming to give me filgrastim injections tomorrow!! Hope they don’t give me aches!!!
Take care everyone
Fiona. Xxxx