Dear Minervaminx I have reposted your post 'Anyone still here' as a new thread in this room as I think you may receive more replies this way.
Anyone still here? Was diagnosed just before Christmas with infraclavicular nodes and awaiting details of a CT scan before deciding what treatment to have.
Anyone else in my situation?
Oh, incidentally, primary diagnosed in Sept 05, finished treatment in June 06 including radio and chemo so it is a shock it is back. First time around it was er+ but this cancer has mutated...
Not in mood for shopping either Hi Julie
Thanks for the reply, yes 6 x Taxotere is quite a lot, think my Onc wants to blast this cancer once and for all - Think he gave me the 6 because i finished my epi cmf 4 months before i started this, ive heard of a lot people just having 3 or 4 because they have had FEC, EPi or another chemo alongside side of it, try not to worry, the Epi you had is a very nasty chemo so i\'m sure by the end of it all, this cancer wont know whats hit it!
I have found the Taxotere tough, not so much sickly but very tiring, aching bones and muscles and its hitting my nails hard ( sorry if i\'m repeating myself i may have told you all this before), then theres the hair loss. My only advice i can give you is to rest after it and stay indoors so you dont pick any germs up anywhere.
You will find you probably feel fine for about 2 - 3 days after it and then it will hit you. I have been told that your bloods can drop quicker with this Chemo and think thats what happened with me as i was Prescribed the GSCF injections to boost my counts on day 6 after chemo but i didnt get this far this time, i went neutropenic straightaway. Think i am just one of these people who is prone to it as ive had it 4 times now. I\'m doing my Christmas shopping online this year (again) as i dont want to hit the crowded shops! might be an idea for you... I certainly do not intend to be in hospital over Christmas! ha ha!
What date do you start the Taxotere? I will be thinking of you, you will have to let me know how you get on. What part of the country are in you?
Well, i best go, got to go to the hospital myself in a bit to get my bloods done ready for chemo tomorrow.
Taxotere seems tough! Hi jakki
Sorry about your hospital stay,hope youve picked up now,that is my dread having to go in hospital i dont even like going for my chemo...as soon as i get there i cant wait to get out....it reminds me im ill,if you know what i mean...
Is it the Taxotere that causes it?ive been quite well up to now,but have a feelig when i go onto Taxotere in 2 weeks im going to get floored with it..your having 6 Taxotere,arn\'t you?...thats a lot,im only having 3...i cant understand how they work out these chemo treatment plans...ive read profiles on ladies that seem to be having the same as me with a lower grade and no lymph node involvement...and i worry im not getting enough!!having high node involvement and a grade 3...mind you,everyday i find something else to worry about....
When the onc told me i was changeing from CMF to Taxotere..i asked if i could have both!!!!....he laughed and said my body couldnt take it.....always been a greedy madam...ha!
Try not to worry to much about not having the scans,i think mine was a waste of time...and ive been told that they are not good for you(which is reassuring,i must say)!!as your injected with that dye..My onc said that a lot of information about how your cancer is behaving can be detected through your blood tests...i.e your liver function and bone activity.. i found this a comfort to know.
Anyway,i better get on with my day,supposed to be doing a bit of xmas shopping..but cant get in the mood this year for some reason....can\'t think why!!!
take care jakki..and keep them bloods up...a good old guiness every night or a glass of red wine.
love julie xx
Know exactly what you mean! Hi Julie
I know what you mean, i often have conversations with one particular doctor at my hospital and every time i see him i walk out of the room in a bit of a state because he doesnt appear to know what he\'s talking about and always has to read my notes as he cant remember any conversations i have had with him or my history, certainly doesnt install me with confidence.
I think you are being referrred back to your breast surgeon as they may want the suspicious node(s) removed. I thought i only had one that was cancerous and when it was removed - there were 3. My breast surgeon removed them. I wish my Oncologist would order an MRI scan, i worry when i hear of other people having them and i havent had one, especially as my hospital i am being treated at is in so much debt, think they are cost cutting! ha ha!
Thanks for asking how i\'m getting on, i had my first herceptin almost three weeks ago along with Taxotere number 4 and yet again, ive been in hospital. I had neutropenic sepsis and spent 6 days in there this time - nurses say i have a regular bedroom in there now!! I ended up having a blood transfusion this time as my red cells had taken a battering too.
They are reducing the chemo dose now for the 2 remaining doses, the herceptin i think was ok, although i was feeling very dizzy after it but i dont know if thats because of my low red cell count, i have Herceptin number 2 along with chemo number 5 of 6 on thursday - i\'ll let you know how i go on this time - hopefully no more hospital stays!!
Take care julie, by the way, when do you finish your chemo?
Hi jakki Thanks for thinking of me.
Sorry should of got back to you about it,went for my chemo last week ,went through all side affects id had then,asked nervously about results....erm,was the response of the doctor!!!!ill just have a read of your notes...
\"the report just says that there is suspicious tissue in that area\"!!!.....well i knew that already!!...and that was it,no news on how many nodes or anything.
Another mri scan is being arranged for the end of my chemo,and if its still \'suspicious\' im being referred back to my breast surgeon..for whatever....jakki,as fantastic as the doctors are,do you ever come out of that little room where you chat to them feeling....\'what have i gained there then\'!!ha!...sometimes i wish id not gone in and just gone straight to the chemo suite.
So thats it re lymph glands.Hows your herceptin doses going on...did i read a post saying you had been in hospital...do hope your ok now.was it a infection?
Love julie xx
For Linros/Julie Hi Julie
Have you had the results of your MRI yet? I was thinking about you wondering how you were getting on?
Not sure which chemo Sorry not sure which chemo. Onc so blinded me with scence over the phone I can\'t remember. Think it was something similar to epirubicin for 4 cycles and something similar to taxotare for 4 cycles, both of which I have had before, but I have asked them to copy me the letter to the GP so that I have it in writing, given every 2 weeks with the injection to boost the white cell count 24 hours after chemo. He said it was cutting edge stuff! Due to start next Tuesday so I will know everything then. Also have to have a scan of my heart first to check it is OK for me to have. Oh what fun!
I know what you mean about the hair... I grew mine back and quite liked my new short style, only to have it fall out again with more chemo 4 months later..... It hasnt gone completely, but it has really thinned and have to say the thought of another Christmas/Winter like it gets me down ( vain i know but i cant help it ).
Like smith says, at least it will grow back - and it cant come back quick enough for me!!
marmite, which chemo are you on? Hi Marmite
I saw my oncologist yesterday and after bone, kidney and CT scan I will start chemo next week. I think it\'s called MVP, a relatively new one. Is that what you are going on?
Don\'t worry about your hair, it will grow back.
Me Too ! I also have positive lymph nodes above my collar-bone also triple neg so no help from herceptin or hormones, but they are checking that to see if it has changed.
Had 2 positive lymph nodes this time last year, 4 years after original diagnosis.had taxotere and capeciteabin and nodes shrank, finished chemo end April. 2 more nodes appeared 2 months ago, various scans and tests etc. all fine. Had the nodes removed mid Oct. both positive for cancer. Now waiting to start intensive chemo, every 2 weeks with an injection after to boost my white blood count! Onc siad they are trying everything to try and make it go away for good! Even though the chance is quite slim. I am trying to stay positive. My hair is still only about 1 1/2 \" long, so no curls for me. I will be back in a wig in a month. Trouble is I always start chemo the same time of year, can\'t bear to think about Christmas.
I\'m glad you are feeling better about the Lymph nodes, in answer to your question, i dont have Lymphodema, so i cant help you there, i\'m afraid.
Hope your well
no news really I\'ve talked to one or two people and no longer feel so worried about just relying on chemo - partly because it\'s a small lump so I somehow think that the chemo could kind of melt it like a small ice cube.
Another thing - do either of you have lymphodoema as I do and it may be due to the cancer shutting down that lymph node.
Sorry me and Julie seemed to hijacked your post!! How are you? Have you had anymore thought about the surgery on the nodes?
Hope you are ok, do let us know
Julie - forgot to say.. Let me know how the MRI scan goes... I\'ll be interested as to what info they give you on the nodes...
Hi Julie Julie
Hi there, yes just coming on here and talking to poeple who know the ins and out of this disease is much easier than talking to family isn\'t it? they dont really understand although they do try but i think i end up worrying them more trying to explain things, so i hope you dont mind me rabbling on to you...
So you are going on to the dreaded Taxotere??? To be honest Julie, as you know, we all so different so you have to listen to your body with regards to the chemo, it is a nasty drug, a hard one i\'d say. I found the Epi very hard to cope with with regards to feeling sick and it lasting days, but the Taxotere its more the aches and pains side of it, they are quite intense bone pains and muscle pains,yes it does make me feel a bit yucky but not as much as the Epi did. I take Brufen and Co-codamol for the pains and whn they are really bad orramorph. The Taxotere makes me very tired and i just got my fourth one yesterday, its now hitting my nails quite hard, they look bruised and they are sore so i have been warned they may turn black and drop off - not a thought i relish!! My hair didnt all fall out just thinned quite abit, its going very near the stage now of having to get it shaved but trying to hold on for as long as i can whilst i can get away with it. I get the numb finger tips too which can be fustrating as i drop quite a lot of things. All i can say is after your first one you will probably feel ok, please dont try and do too much, i think i went wrong there. Because i felt fine i carried on as normal and then the pains hit me about 4 days after and i must of picked up a bug as i went neutropenic and spent 5 days in hospital so please be careful even if you feel fine. Anyway its supposed to be good stuff and your 3 should fly by! Oh, after the first one by the way, i have found the next ones a lot easier so i think your body must kind of get used to it if you know what i mean..
I had my first herceptin yesterday and i feel ok today, i was very tired yesterday as i had to spend the whole day at the hospital being monitored as it was first one.
Anyway, think i have waffled on for far too long
Thanks for replying,fingers crossed for scar tissue..Didnt know her2 status can change,god this breast cancer lark is complicated!
I have had 2 Epi and 1 FEC upto now..1 more FEC to go then 3 Taxotere.I have actualy found chemo alot easier than i thought,with only a couple of yukky days.I get the feeling Taxotere is a tough one though,so may be eating my words!
Good luck with your 1st Herceptin today,i know what you mean about being tied to drugs indefinately,but hopefully you will get used to it being a part of your life and it is a fantastic drug that we couldnt be without now..
I will be getting results from my MRI scan in a couple of weeks,so should get to know extactly how many nodes i have invovlved..i will ask my onc how many we have also..ive not heard of many people with collarbone nodes affected..wonder if its unusual. I only had 9 lymph nodes under my arm in total which is so few compared to many people..all of them had cancer in them.
I must say it does help being able to come on these forums and swap tips and information or even have a good moan!it saves rambling on to family and friends..even though they are closest to us,they dont realy know how we feel,not realy....
Take care julie x
ps spelling is not my stong point ..lol
Thanks for asking about me.. Forgot about that posting... must update it.
I mentioned this node to my oncolgist on monday when i saw him and he seems to think its scar tissue from where the other nodes were removed. I\'m seeing my surgeon in 2 weeks so i will ask him to check it out too, to be sure, after all he\'s the one that removed them.
How are you finding the chemo now its been changed? What stage are you at with it? I know of someone else that had thier nodes left alone on the collarbone and they also had FEC/Taxotere and its been very successful, it is a way of them monitoring how well the chemo is doing for you, so please dont worry about them still being there, i\'m sure if they need to remove them - they will.
I start Herceptin tomorrow as my HER2 status changed to positive and i have to have this indefinately.. have to say the thought of the infusions every 3 weeks for life is getting me down.
Please let me know how your doing
Me too hi to you both
I to have cancer in nodes near my collar bone.This was discovered after my masectomy,and my onc.didnt want to delay starting my chemo with performing another op to remove them.He also said to leave them for him to \'keep an eye on\' would be a good indication to whether the chemo was working.I suppose this makes sense when you think about it,but i found this difficult to deal with at first,wanting them removed as quickly as poss!!
I was originaly on 4 epi and 4 cmf but have been changed to fec and taxotere.I have noticed one of the nodes has shrinked quite a bit and it is encouraging.At frist i was constantly looking through the mirror prodding at it and asking boyfriend and kids if it looked like it had shrunk!!!
Jacky i have been following your thread on the other website re your latest finding of another node and you were also asking how many we have around the collar bone area.Any news on that?
love julie x
Yes, me Hi
Sorry to hear about your recurrence, I had a recurrence in the supraclavicular lymph nodes on my collar bone just 4 months after finishing chemo, see my profile.
I had surgery - there were three infected. The op was a very simple one and i was admitted as a day case on the short stay unit. It was done under a general and my scar is very neat.
I also had to have more chemo, this time i\'m having Taxotere. I also start Herceptin on Thursday and will stay on that indefinatley.
Has your surgeon mentioned whether you need a bone scan and CT scan?
I havent come across many people in the same situation to me so will be interested to hear what your treatment plan is.
Take care and please let me know how you get on
cancerous lymph node on collarbone I have a localised recurrence of a cancerous lymph node on my collarbone. Has anyone had surgery for this? I feel nervous about relying on chemo to get rid of it.