Hi there, wow what a response. Thanks for all your welcomes. I must admit to some reluctance to registering on this site, let alone posting. But my dear husband just kept gently encouraging me. Getting the double diagnosis has thrown things out of it’s ‘normal’ (as perceived by other people) order for treatment and I jumped into the chemotherapy (taxotere) and targeted (herceptin) treatment within days of the diagnosis for secondaries although at 3/4 dose. My oncologist has had the attitude of hit it fast and hit it hard! I think if you have surgery first then you have some time to contemplate treatment and how it may affect you. I have secondaries in my liver, but the bone scan showed a highly suspicious area on my spine between my shoulder blades that was not confirmed by the ct scan. I have blood tests and see the oncologist again on Tuesday. Also had a heart scan this week. So should get the results of that and find out if I can go up to full dose for my second lot of treatment the week after. Are there any questions anyone found particularly pertinent to ask their oncologist after the first cycle of treatment? Or wish they had asked? Thanks to everyone. xx
Hi snoogle
So sorry to hear of your double whammy. I was also thrown in at the deep end with liver and lung mets diagnosed at the same time a year ago, age 40. It is a shocking thing to hear and my heart goes out to you as I recall my own diagnois and the horror you are suddenly immersed into. I do remember feeling so much better once I had a treatment plan and it got under way.
I hope you have a good result from the Taxotere - that was also my first line of chemo along with Carboplatin and Herceptin - it worked really well on my liver mets and shrunk them quite dramatically. My liver function tests returned to normal in about three months. I haven’t had surgery either and whilst it hasn’t been ruled out, it is not seen as a priority by my oncologist (tumour has reduced in breast too). I do have to giggle when I catch people surreptitiously eyeing up my boobs and wondering what I’ve had done. Anyway, it sounds to me like you’re coping admirably well considering you were diagnosed less than a month ago - and the DLA form is a challenge in itself!
I’m sure you will find lots of support on this site - you may even have a giggle sometimes, or a rant or a cry. I can’t think of any questions off hand as I imagine it would depend on what information you’ve received to date, and what your symptoms are or how you’re coping with the chemo. I would suggest investing in a little notebook to take on all your visits. Jot down questions when they come to mind and then refer back to them when you see the onc. Also, I made sure I was copied in on all correspondence between the hospital and my GP so that if I had a dozy day and didn’t take notes properly I’d see it backed up in the letter.
Best of luck with your treatment.
Big hugs
xxx
Hello all, The GP has given me form DS1500 and a Macmillan Nurse is calling round this afternoon to assist with completion of the mobility section of the DLA form and to give me advice on whether I should claim for Disabled Blue Badge separately. I am experiencing breathlessness, but not sure of exact cause. Hugs to everyone. x
Hi Snoogle
DLA is made up of two components: care component and mobility component. Both are offered at higher or lower rate. If you are awarded the mobility component at the higher rate then you will automatically be eligible for a blue badge (after filling in another form of course!)
My hospice nurse advised me to complete the mobility component of the DLA form describing my worse days of immobility. I get pain in my shoulder and from tumours in my neck and described my walking (almost no existent) on bad days.
best wishes
Jane
Hi snoggle
what a great name! snoggle! sounds great.
i am sorry to hear about your dx its a lot to take in at once.
i had bad news yesterday, but feeling more confident today - got 3 tumours in my liver and one lower spine, but the other tumours the original ones in my lungs are stable. was a bit of a shock!
but am back at work today as normal and having to comfort all my colleagues and friends! as i dont cry but htey do it for me!!! so havin to give lots of hugs rather than receive them!! its funny!!
anwyay i hope you are bearing up ok, i feel confident after reading about those others on here who have had lung, liver bone sec for years i think we just have to say right we just have to get this sorted and it will be ok, move on and carry on. i know its hard but i think that wil help in the long run.
please keep in touch like to hear how you are doin. I am waitinbg to see another specialist befroe they decide what chemo treatment, alttho immediately switched to exestane yesterday. so fingers xd.
hope you ok and try enjoy the easter break.
Rachel 
xx
Hi Everyone,
Zippy; Sorry to hear about your news. My oncologist is being very cautious about the level of chemo given that my confirmed secondaries are in my liver. I am going in for my second session of taxotere and herceptin today, but when I saw the oncologist last week he said he was keeping me at 3/4 does, not because of my bloods, but because I am experiencing extreme breathlessness. As you prob know the liver matebolises (spelling?) the drugs and mine is obviously not functioning at full capacity. When the previous specialist (breast surgeon) showed us the scan of liver there were loads of tumours, didn’t count as was feeling shocked and overwhelmed at that point! The questionable secondaries (or they are just not telling me yet) are in the area between my shoulder blades which was inconclusive between ct and bone scans and last Thursday i had a brain scan, should get the results of that today. Hopefully its just extreme chemo brain!
I find it weird that I am spending most of my time comforting others. We live away from close family, but saw 17 of them over the last two days and some of their reactions at seeing me for the first time since dx were very strange! It was quite emotionally draining.
Yes, the encouragement of others’ experiences can be quite uplifting, especially if I am having a bad day.
The Macmillan Welfare Benefits Adviser did come round and was incredibly helpful with filling out the DLA. Would recommend their service to anyone. Now just waiting to hear result…
Good luck with your new treatment Zippy. Snoogle x
Hi Snoogle
I find many of the reactions from family and friends really hard to cope with - they can treat you like this is the last time they will see you , or totally ignore it -or the how are you questions mean you are constantly repeating yourself!! its just awful!
I was on redduced chemo cos of liver mets until the liver function tests improved so think thats normal … and my mets are too numerous to count too!! good luck with results today jaynexx
Hi, I saw the oncologist today during my treatment and he is still unhappy to increase the taxotere to full dosage. Next time I will have the 3/4 taxotere with carboplatin, but have to have tests on my kidney first! Regarding the brain scan, it sounds like there is no cancer.
On the family and friends front, aside from ringing my dad and my uncle-in-law, I couldn’t face the normal ring round, so just sent a short text to the rest. My eldest brother is the totally ignore it type and hasn’t told his kids what’s going on, another brother has minimal contact, but my third brother and my sister are being very good emotional supports, even though they live so far away. It is very hard for them as our mother died only 18 months ago from cancer and within three months of initial diagnosis.
Hope everyone is bearing up well. Snoogle xxx
Hi Snoogle
I hope YOU are bearing up to chemo and all the shock of your dx! Good to hear the brain scan results are good - something less to deal with amongst all that you are having to deal with. You sound remarkably strong and in good spirits which is so difficult when you have a secondary dx - good for you. Families (and friends) can be incredibly insensitive about the whole BC thing and when it comes to secondaries I think very few understand them. I must admit I didn’t really until getting them myself and reading up on any info I could get my hands on. I’ve recently given my brothers some links to some cancer websites which explain things quite well, I hope they now realise that this ‘thing’ won’t go away but also that I can continue to live my life as ‘normal’ except for the regular interruptions from the medical world. When I was dx last year I used email a lot to let people know - I really couldn’t face repeating myself so many times. I then gradually stopped the updates on my chemo/scans/treatment and only mention results etc to those who are very close to me. There’s another thread on here called something like ‘Now you are better’ which shows how insensitive people are with their ‘helpful’ comments about us mets girls 
Take care and hope the chemo gets to work and you also don’t feel too worn out with the side effects.
Nicky x
Hi Snoogle,
Thanks for your post. glad to hear no c in the brain! thats good news.
Will be in touch again - must do some work!
Rachel xx
Hello, Just thought I’d let you know that I had a call from the lady from the Macmillan Welfare Benefits at the local CAB. She called to let me know that she had been advised that I had been awarded DLA for both parts at the higher rate. I haven’t heard anything directly myself, so will have to wait to do so before applying for my disabled badge and free car tax/refund on the disc purchased recently. This lady has been incredibly helpful and I would recommend to anyone applying for DLA (or any other benefits)that they utilise this kind of service. These forms can be very daunting so it’s good to know there is help out there. Still waiting for the appointment to get the kidneys checked prior to starting carboplatin. Another day in hospital… still I did borrow a couple of books from the library the earlier this week! Best wishes to all. Snoogle x
Thats good news about your DLA. I found that the money appeared in my bacnk account before I received the paperwork from the government.
So keep checking.
I didn’t apply for my blue badge straight away either as I didn’t think i needed it at the time. I have it now but I tend to use it at the hospital not to always park in the disabled bays but because I can get free parking with it considering the amount of time I am at hospital its worth it.
Some days my breathing is really bad and I can’t walk far which is when I use my badge in the bays but the seem to always be full these days