So finally have had some feedback on results of PET scan, which suggest spread of cancer to
right neck and upper armpit lymph nodes,
9mm lymph node behind the pancreas,
T11 and T12 vertebrae (two tiny spots in the spine)
and no other convincing definite evidence of secondaries elsewhere. My oncologist seemed rather pleased with this but to me it has still come as a horrible shock, especially as the last bone scans I had in June and this week did not present any evidence of desease.
I started Herceptin and steroids yesterday, and had a portocath fitted in the evening which I am hoping can be used for Docetaxel treatment today.
Am still undecided on cooling cap as the nurses are not very positive about the success of this with taxotere but may try for this week and see how awful it is.
Also I am considering doing the G-CSF injections myself other than going in to hospital another day again and for this reason only.
My last biopsy confirms the tumour is strongly oestrogen sensitive but progesterone insensitive and they are still awaiting the results HER2 test to see if still positive, but started me off anyway on Herceptin in the hopes nothing has changed since first diagnosis in 2003.
I suppose I feel even more sick about this spread as back in 2004 there was debate between my NHS oncologist and BUPA consultant about whether I should have had taxotere after the FEC (which didn’t actually do anything except make me badly neutropenic) and I was still left with 19/21 lymph nodes infected and still large bilateral tumours. Also was just too early diasnosed to get the benefit of herceptin. I feel that I am now getting the treaments I should have had back in 2004. I was simply put on Tamoxofin and then Exemestane but didn’t quite make the magic 5 years NED.
Reading back over this I feel a bit pathetic really, knowing other people are dealing with much worse than this, so firstly thank you everyone who has taken the time to read this, just need to get if off my chest and release how angry and scared I feel - it is so hard to be upbeat and positive for family when really inside you are heartsick and terrified. I would be grateful for any feedback or advice you could give me concerning any of the above points, especially before I see my oncologist again on Tuesday.
you are not pathetic! I think we have all been or still are angry and scared. By now I have lost the anger, but still get scared. I have secondaries in liver, lungs and bones.
I lost all my hair when I was on Taxotere, I wasn’t offered a cold cap so don’t know anything about that. I did try to use the cold gloves to protect my nails, but decided not to use them after 2nd dose, because they are uncomfortable and after a while your hands hurt. I wish I had kept using them. Have since lost all half of my nails and the other ones are badly discoloured.
Sorry to hear that your fears are confirmed but you are not at all pathetic - well all understand too well how it feels to be in this position. Having the fear of secondaries confirmed is devastating but you will make the adjustment. As treatment goes on you start to adjust to the knowledge. I actually had several years of being assumed to have been her2 positive but before much was known about this. But when I started on Herceptin back in 2004 it made all the difference. I hope that it is going to work as well for you. One of the ‘exciting’ moments in the treatment was that with the external lumps I was aware very quickly how I was responding to the treatment.
May I suggest you ask your consultant what he is doing about the spots on your vertebrae. Is he going to give you some form of bisphosphonates? I had taxotere back in 1999 and was told then that the cold cap was ineffective with taxotere but being me I insisted! I did not lose any hair, so I think it is worth persevering if losing your hair matters to you. I do wonder if the makeup or dosage of taxotere has changed over the years because back in 1999 I did not have any problems with losing fingernails, and don’t remember hearing of others doing so.
I hope they are using your new portacath today for the docetaxol - it is quite normal to access it it almost immediately after the surgery. Have had mine now for nearly 2 years and it has been the best thing i did!
first you are not pathetic, and second this is a horrible shock for anyone, I am afraid I have a prettty good idea of what it feels like. I am constantly amazed at the tricks and turns that this disease takes, how one can be clear and then have secondaries all within a relatively short space.
Dawn’s poiint about bisophonates is quite important - they are very effective in keeping bone spread under control and you should definitely ask about them.
I had the cold cap for taxotere - it worked really well for me and no one would have noticed the hair loss, I found taxotere quite manageable after having done FEC back when I had my primary in 2003, lots of horrid bone aches and pains but these can be controlled. A port is a great thing to have and will make all chemo and blood tests much easier. Are you being treated privately now ? I notice your comment about BUPA/NHS.
I hope you get on ok with the taxotere- come on here anytime, this site is lucky as it has alot of women who are active contributors and are incredibly supportive.
Do I need to say it too…of course you are not pathertic…
I can understand your bitterness about not having taxotere or herceptin back in 2004…I was misdiagnosed for 7 months before primary diagnosis and it may be a similar ‘what if’’ feeling. But somehow I draw a line under the past and just try my best to live with what is now.
I guess most of us are heartsick and terrfied inside (and outside) but I find a year after rediagnosis (complicated…regional metasttic incurable recurrence tumours in neck and chest wall…now affecting voice through nerve damage…so I squeak rather than talk…and eye…gone droopy.) that the rollercoaster shifts and changes. I do still smile and laugh…(good today…high on steroids…tomrrow will crash in taxol desolution fatigue low.)
I think each of us helps each other in all kinds of different kinds of ways.
My hair will go again shortly I expect. I’ve never bothered with cold cap…sounds painful to me, but I do know women whose hair it has saved on taxotere.
Hi Pat,
sorry you have had bad news, I know how devastating it is to be told you have secondaries, I agree with the others, it is important to have biphosphonates for the bones. When I was told i had secs 2004 onc was more concerned about clusters in my liver and I only started biphos in May this year. I am just about feeling the benefit. I had a bad reaction in 2004 and it put me and the onc off.
We all need to allow ourselves time for the shock to settle and the fear to subside. Dont get me wrong I am sure we all go to that dark place from time to time, I know I do.
After fec my hair grew back dark brown, this time the 1/2 inch I am very proud of is ash blonde, as I due to go back on tax who knows what colour it will be!
Hope you are able to enjoy the weekend and again I just want to say how sorry I am.
Thank you everyone. Does the Docetaxel gets worse as time goes on? At the moment everything aches. Any advice? Thank you for the comments about the biphosphonates, I will ask about that tonight. Crashed all day yesterday post steroid fatigue so naturally couldn’t sleep last night and this is probably why I am feeling so sorry for myself again this morning. I must admit today I am wondering how I am going to cope with it all - another 5 sesssions of this and the scareyness of the second week when the immune system is likely to be very vulnerable.
I didn’t have any infections colds or anything on taxotere - never been healthier (ha) in that sense. i did have the injections thought that boosted the blood cell counts…if you need them they are great, but they do make you even more achey, Are they giving you anything for the aches ? You don’t have to suffer in silence with them, you can discuss with the GP if the onc team isn’t. I do hate steroids myself…I am trying to do weekly taxol without them and so far ok,
Don’t think too much about the number - just about today -and looking after yourself now…
I have to say that I did suffer on tax, first one was OK, but had the yuk mouth and achy body, and stupidly I carried on with my life completely normal, running around after my kids and going to childrens indoor playthings, and on second tax ended up with cough/cold which turned into chest infection, so I would say, at the first sign of a sniffle, check your temp, if rising, go to docs immediately. I didnt really think i was feeling ill, although felt very lathargic and not quite myself and left it too late, so ended up in hospital for 8 days.
It is doable though, but I think you need to remember wot is happening to your body and slow down and try to rest as much as you can, avoid people/places where infections rife, if go docs, make sure they know that you cannot sit in the waiting room, and get seen straight away.
Sorry, probably not what u wanted to hear, but i think it is best to know all angles. Lots of people have no probs with taxotere, I flew through FEC with no problems at all, and so thought I would breeze through the tax, oooooh how wrong i was. LOL.
But I came out the other end smiling, and the scan results were worth it, as there was significant shrinkage to my liver tumours.
yes dawn raises a very good point there (hi dawn) which is to be vigilant -because chances are one will be fine on chemo, BUT if you do get something get it seen to…I think it would be my instinct just to wait and see, but if I keep reminding myself of stories like this and say if I do feel unwell…I will go back right away.