Thanks for your reply Jakki Jakki
Im so glad you have a plan. That fear of the unknown is like nothing on earth and is terrifying. I hope you don't mind but I spoke of you to my brother. He is a research scientist for Roche and makes Herceptin and other chemo drugs. He said he has seen remarkable results with Herceptin. Don't give up hope and keep going back to the plan.
My surgeons wrote me a flow chart when I was 1st diagnosed, including a contigency plan if everything was going pear shaped and this helped me a lot. Maybe ask your docs to write you a flow chart of your treatment now and then a possible back up plan should you need it (maybe you get an infection).The objective seems to be to shrink the nodes or make them disappear which is a good objective.
Don't think about the scans yet - that's down the line too far. Just think about shrinking the nodes.
I found cutting things into bite size bits helped me but I do appreciate everyone is different in how they cope.
Yes, I am back at work and full time. I think I phased in over a week back in Sept. I felt rough at first and had all sorts of strange feelings including what I now believe were a couple of panic attacks (at the time I felt like my heart was about to pack up!). Gradually I feel things have gone back to normal and Ive tentatively started to draw a line under the whole episode. I never, ever forget how lucky I am though - and having a mastectomy was a very small price to pay.
keep well, look after yourself and take lots of time to rest your mind and your body.
For Kathryn Hi Kathryn
Thanks for asking about me..
I'm doing ok, obviously feeling scared but also hopefull.. I saw my oncologist yesterday about a plan of action.
He wants me to continue with my radio along with the herceptin to see if it shrinks the nodes. At the end of my radio do a bone scan and ct scan to see if I have any further progression. By then i will have had some more herceptin infusions as ive only had 4 so far. If the scans show more progression he will start more chemo straight away.
If the scans come back clear then he said he will leave me on herceptin a little while longer and monitor the nodes, if they dont disapear or they get bigger he will know that the herceptin isnt working and will put me forward for the tykerb trial and start the chemo that goes with it.
Anyway, i feel a bit better knowing he has a plan in place, i'm trying to follow your last advice of taking a day at a time - find this helps.
Hope your ok, i read on your profile you are back at work, hope this is going ok.
For Daisypink Hi Jakki
Just wondering how you are doing.
For Kate Kate
thanks for your reply.. gosh.. you have been through it havent you??
Your words of encouragement are just what i needed and i hope that they can find a treatment thats right for me.. I know of another lady thats had vinorelbine and she has had some really good results so i hope this continues for you..
I have been following you thread with the gobby gang and you are such an inspiration, hope you have a great time on sunday...
For dilly Dilly
Thanks for the reply and recommending that other site, i will check this one out.
I will do some searching about the centre of excellence post too..
Hope your well, take care
For Kathryn Kathryn
No need to thank me, i'm just glad i was able to help you, you have helped me by replying to my post, it really means alot, it shows that people care..
Your brothers words of wisdom are right and i have also decided that I am just going to try and deal with this one day at a time.. I have learned that letting my mind run away.. doesnt help me or others around me..
hope your well
For Sue Hi Sue
Thanks for the reply and your words of encouragement
My Onc hasnt mentioned Capetcitbine but i will ask him about this..
I am already on Herceptin, only had 4 doses so far, onc is going to leave me on it a bit longer but he doesnt think its working..
I'll keep you posted..
Hi Julie/Linros Julie
Hi ya.... sorry for not replying earlier but we had a power cut due to the weather..
Thanks so much for replying.. you know Julie, everything you have said is what ive been thinking.. dont apologise for asking questions... i have plenty i need to ask and the more ideas that people come up with the better..
It is the node that i said was aching way back in October last year, turns out that there is 2 there now! I can honestly say i was happy with my treatment, i've had a few times when i have had to remind them about things, fight for certain drugs etc. My Onc has an excellent reputation and his specialist subject is BC but I have to admit I am losing faith a little, as if i hadnt stamped my feet on wednesday i would never of got to see him.. that thought scares me even more! one of the reasons i stamped my feet and insisted on seeing him was to get my prescription of arimidex which i should of started taking over 3 weeks ago - he hadnt prescribed it and had promised to see me twice and hasnt!
Ive heard that christies has an excellent reputation, i've rang my BC nurse and i'm going to see my surgeon on monday so i will ask about about a referral to see if can go this route.. I asked my onc if they would remove these nodes and he said no, thats one of the reasons i'm going to see my surgeon as he may say otherwise!! i just want them gone!
As for the lack of scans... i'll get on my soap box now! ive asked for an MRI before and asked again on wednesday but he doesnt want to do one! I dont know why, the only reason I can think of is that it is no secret that the hospital i'm being treated at is is a lot of debt and are cutting over a thousand jobs so whether its a cost issue, i dont know! I am seriously thinking of paying private for one now.
I hope that you are ok, i know what you mean about pretending that your ok to people close to you when deep down your not..
By the way, well done on having your last taxotere, bet your blooming glad that ones over!
I also asked the question about secondaries and got the same answer, the only difference with is my onc said he wouldnt take any further action until I present them with symptoms of secondaries! great eh?
Wish they didnt make us wait for these results, its hell, I do hope that everything is ok with you, how do you feel with regards to having another op?
rambled on enough, and cant remember what else you posted so will go now.. You take care and i'll keep you posted and please keep me posted.. feel free to PM me...
I do think I know how you feel. It is21 months since I was diagnosed and I've had 3 chemos plus herceptin and now on biphosphonates plus rads plus secondaries.
My story is as follows - I was diagnosed in april 05, had FEC first and then mastectomy . The tumour was still found to be over 7cm and 17 out of 24 lymph nodes invaded so obviously FEC did nothing for me. I developed skin mets 8 weeks after mastectomy and had rads and boosters. So I then taxotere between dec 05 and march 06 but my breathlessness remained although nothing showed on scans. (taxotere did't work for me but I think it did slow things down).
In may 06, I developed hip pain but bone scans or xrays did not show anything until august so I spent 3 months in agony and not knowing why. Then I found a new lump in my armpit in august 06 on the other side and after a CT scan all my breathlessness which I'd had since diagnosis was found to be due to a huge widespread secondary in my lymph system plus a little one in my liver. I then had vinorelbine (another chemo) between september 06 and last week. This has made me feel so much better and I now can walk and talk at the same time. I'd ended up having to use a disability scooter cos I couldn't walk more than a 100yds. Seems for me vinorelbine has been the one that has helped me but its effects probably won't last for long. Now waiting for new CTscan to see where to go next. Probably will need more chemo in next few months.
I started herceptin October 05 and have continued on this despite all the progression of my cancer because who knows how much worse i'd be without it..
I know there are still a few more chemo options open plus this tykerb if the hospitals ever agree to the extended trial but my onc thinks NICE will never recommend it because it is too expensive.
There are plenty more chemo options open to you. So don't give up. The one chemo they thought might do a little something has been the one that made the difference to me - who knows what will work for you. Maybe you need a second opinion.
If you ever want to contact me, please do - you can on the other site
This is such a wicked disease and I do feel for you and understand how frigthening it is when chemo appears not to be working.
Thinking of you
Jakki I have posted this for new user Sue
I am in a similar situation as you. I was diagonised for thr third time on 1st Nov (first time May 2003, Second time June 2005) last year and currently going through 30 days of radio. I have 5/6 lymph glands positive, but they can't operate as they are too close to nerves/blood vessels and also I have had all the chemo / herceptin / tamoxifan / arimadex and already 30 days of radio that you can have and so radio is the only thing left to do.
I finish around 6th Feb and then wait 3 months for another pet/ct scan.
It's a right old buggar I have to say. I am at the Marsden Fulham site and have to say that the treatment for radio has been a little up and down as my arm has been aching since the beginning of the treatment. This was stopped for 3 days and started again this week.
If this doesn't work then it's on to the trials I guess, on the tykerb drug as you mentioned. There is a study in USA about it. But it seems to be for terminal ill patients.
I have to say is the unknown that I don't like. I wish I knew when it was going to be all over.
Hope all goes well for you
Jakki have no personal experience but read that Tykerb is a big success. So hope you get on your trial.
Two suggestions for help.
First is to register at this site http://www.bcmets.org/.
The US ladies are VERY knowledgeable about what treatments are available- more there than in UK so need to check NICE to see if allowed here. Ask questions and get answers from those who are further along the BC road than yourself.
Secondly a lady who posts on this site recently wrote that you can ask your doc/onc for referral to a centre of excellence. You can be seen, tested and get a programme of treatment which is carried out in your own area. This enables you to get the best and most up to date treatment and could be the answer for you.
I hope that you will get help and the right treatment VERY soon, best wishes, dilly
You wrote to me in July when the bottom of my world had fallen out just days after my diagnosis. I never got back to you to say thank you for your kind words - they really did help me.
Please keep on having hope, lean on anything or anyone to help you.
My case is minor compared to you but my brother told me to take one step at a time although its so hard to let your mind run away. You will get through this.
Sorry about your news jakki Hi Jakki,
Im so sorry you have had bad news,you are going through so much at the moment...are these the nodes you could feel a while ago,and they said it was scar tissue?have they suggested takin them out like the others?srry to bombard with questions....maybe the hereceptin with clear them have they mentioned that?
Oh Jakkie,i realy feel for you i know what its like to be scared,i was going to private mail you on the other site today,then come across this post....i had my last Taxotere yest...and my onc is worried about that collarbone area,which includes lymph glands because of the amount of tissue thats involved...raidotherapy is postponed till scan reults at the end of feb..got ct and mri scan 13th Feb(how the hell im gona cope with that wait,like you with great difficulty!.....anyway,if chemo had not cleared the area enough and the tissue affected is deep,ill have to have another op,maybe removing some muscle from chest wall...radothereapy to follow that..i asked if it could be caused by a secondary and i wish i hadnt as he said he didnt know,but possible the area has been there since diagnosis!...has your hosp suggested a mri scan jakki?? if not id push a bit on that one,as my doc said mri scans are very good at looking at tissue and although my lymph nodes are involved a ct scan would not pick this up....maybe they should have done a mri before removing the others that you have had done...
I think im rambling a bit here,i just had a shock when i read your post...im sure there are many more treatments to try you with jakki,theres so many out there,i dont know whether your happy with your treatment there,and forgive me if you are,but if not(i know youve mentioned the lack of scans before) have you thought of maybe a referral to christies(is it very far from stafford!,not very good on distances! or maybe a second opinion somewhere else...im just concerned that you mentioned them lymph nodes aching some time ago and they said scar tissue without investigating further!(on my soap box now)
Jakki ill get off now,i do hope you pick up today,it horrible,it realy is..to feel so vulnerable...I phoned my mum and sister last night and said in cheery voice everything is fine...to protect them but when your on your own,your heads exploding..
Is that drug you mentioned a chemo,or like herceptin? i will enquire if its available at Christies when i go...i have had my frustrating moments there every now and then,mainly with one of the docs blazaa attitude,but as for all the latest drugs availability i believe it is on a par with the Royal Marsden...
Take Care Jakki
I was re-diagnosed with bc two years ago in my good breast after having a mastectomy on the other in2003. They couldn't operate as the skin was involved and so I was given Taxotere to shrink the lump. This didn't work and I was then put on EC. This shrunk the lump a bit but not much. My onc then put me on Herceptin with Arimidex and after one dose the lump shrunk by half!
I've had eight dose now and my last mammo showed that there is no sign of cancer in that breast and my skin has mostly cleared up. The little marks that are left are 'dead cells' my onc tells me.
So don't despair Jakki, just when you think nothing is working something comes along. Has your onc tried you on Capecetibine? (sp). I've heard this is good. I think it's also known as Xeloda.
I do hope you get this sorted soon.
3rd time in 20 months Hi
I saw my oncologist yesterday who gave me some bad news that i have 2 more Lymph nodes in the supraclavicular area that are cancerous...
Ive just finished Taxotere chemo for the other 3 that were found there in August last year, I'm really scared now as it appears that nothing is working for me..
Has anyone else been in the same situation? I'm feeling very isolated and scared right now.. can anyone give me any hope? encouragement??
My onc is trying to get me on a trial for Lapatinib (tykerb), has anyone been on this?
3rd time in 20 months