first chemo

I haven’t posted for a few weeks as have been busy organising our wedding-but now I am facing first cycle of chemo-taxotere plus herceptin, sooner than I hoped.
Am really worried that I am not going to be able to cope with all this, and have read postings about how awful taxotere can make you feel.

I am trying to be positive and proactive-have started counselling, made an appointment with Headstrong, but am still feeling overwhelmed.
Any advice?

Hi India,

Thought I hadnt seen your posts on here for a while! I always look in this category to see how people are getting on. Hope the wedding organisation has been going well and hope and assume it is at least taking your mind off everything else.

I have had 3 FEC which have gone quite well and like you am starting Taxotere next Wednesday. However, Im just having the Taxotere on its own for the first session and for the next two will have Taxotere with Herceptin. Like you I am also very apprehensive about it. I am drawing strength from the fact that not everyone feels terrible on it and I could just be lucky. I had a look this morning on the cancer research UK site which has side-effects for individual chemo drugs. The Taxotere section is really useful and gives so much more information than those handouts they give in the chemo unit. For some side-effects it even tells what percentage of women suffer them. I think this is probably much more reliable than doing what I was doing before which was quantifying the number of negative experiences on these forums and thinking these were representative. Mind you even on here you will find women who dont find Taxotere too bad.

I’m sorry you still feel overwhelmed but it sounds like you have a lot on your plate at the moment planning a wedding and I seem to remember you have young children too, some people find wedding planning and young children overwhelming on their own! I think counselling is a fantastic idea, I am a very positive person these days despite everything, this doesnt come naturally to me and I have the counselling I have had for other problems in my past to thank for this. Basically, over the years I have managed to turn around my glass half-empty outlook which led to lots of problems of depression and the like to looking at the glass half-full. No mean feat but great if you can pull it off!

Take care
Pauline x

Thanks for your reply Pauline-I didn’t end up having the taxotere as I had a severe reaction to it-apparently very rare- as soon as it started, but was fine once they gave me antihystamines etc IV. Good news is that according to my CT , my disease is stable despite slightly worse symptoms, so Im going to try herceptin and tamoxifen for a couple of months.

So, I’ll have my hair for the wedding!

Good luck with your taxotere, and I’ts great your staying positve.

India

India, oh dear, I was warned about the allergic reaction at my last chemo, it terrified me! You poor thing, I hope you feel okay now. Its good news about your CT scan, from what Ive read about Herceptin it really is a fantastic drug, there are people who have stayed stable on it for years. Although its bad in one sense being Her2 positive (I am as well) it really seems that there are all kinds of new options available for us.

Every cloud has a silver lining eh, you get to keep your hair for your wedding! When is the happy day? Hope its everything you wish it to be and more! My wedding day really was one of the best days of my life (apart from kids being born).

My positivity is being severely tested as I get nearer to the Taxotere, I dont know why but this scares me more than anything else.

Take care
Pauline

Hi India
i just wanted to let you know that my liver disease has remained stable for a 2 1/2 years on herceptin (with just one lot of tax which reduced my liver mets slightly) I continued to take hercptin alone ( as there is evedence that the combination of herc/tamoxifen for most people doesnt have that great result - something to do with the tamox coating the cancer cell to stop ER getting to it to feed it ( which is good if your ER+ alone but not so good if you are her+ because it also stops the herceptin getting in the cell too) Sorry trying to make this sound as least confusing as poss! Any way my disease remained stable for a further 8 months (slight shrinkage infact) but the herceptin gave me heart damage ( which has now recovered!) so I am now on famara alone, everything in liver (touching wood) the same.

I would ask your onc about going straight on to AI (ie famara arimodex) as they work in a diff way allowing the herceptin to get into the cell to kill it.I know the NICE guidelines state that Tamox is a 1st line ER inhibitor but when you get secondries it is your right to be able to go straight onto arimadex or famara (along with zoladex if you are pre menopausal)-the more expensive ones, dont be fobbed off with tamoxifen (I know a lot of women have had good results with tamoxifen but these are likely to be her2- people).

I’m not sure what Pollym is refering to saying that it is bad to be HER+ …automatically my oncs told this improves my prognosis, it maybe that she means its more agressive, but as she says they are finding loads monoclonal antibodies that seem to work just for HER+ people - it means more medication, but hey if it keeps us here a bit longer - what the hec! Like you I was DX with secondires at primary, up untill a year ago i felt like I hadn’t come up for breath, it was one thing after another. But now its part of every day life & physically 3 1/2 years down the line I feel NO different - mentally things have evened out too. As human beings be learn to cope amazingly.

So enjoy your wedding (I was due to get married 3 months after DX 1/2 way through chemo and CANX!!! never got round to re doing it!)
please contact me for any questions. Oh just one jast thing…are they sure it was the tax that gave you the reaction?? its just I have an allergy to herceptine, but they just give steriods and piriton to controle it.

good luck
Love Amber x

Hi Amber,
Thanks for your mail. It’s great to hear that everything is stable for you, and gives me more hope. Do you know where the evidence is for the tamoxifen/herceptin effects, so that I find it before seeing my onc to discuss switching to arimidex?.

It was definately the tax that I had a reaction to, as I had it on its own, and then went back the next day for the herceptin.

Wedding plans are going well-I think, and am now starting to look forward to it .

Love
India

Just finished my 6th Taxotere, I didn’t find it as bad as Chemo I had 6/7 yrs ago. I took dexamethasone the day before and for 3 days (16mg) then reduced the dose over the next three days. Some mild nausea, and numbness of fingers and feet as I got further into chemo. Admitted with neutropenia too later in treatment - but that is me and not you, we all cope differently. Don’t dispair you can get through it, just rest and listen to your body.

Bridget

Hi India
My Onc actually told me ( he is proff Ian Smith at the Royal Marsden). He told me the combi wasn’t that great but tried it anyway, I then had progression to liver 8 months later… then he took me off tamoxifen - I was thinking the worst as I was on one less med and herceptin alone (3 months later my scan showed my tumour had shrank without tamox - gosh hope i’m not confusing things here). it was only when I showed signs of progression to bones they put me on famara - which is known to work very well with herceptin.

Its very strange when you are DX with secondaries as they seem a bit more laid back with the ‘trial and error’ type of thing (the getting things done quickly seem to go out the window!)…ME I panic and think I want the best treatment, most expensive treatment NOW not in 6 months when they’ve worked out this regime is’nt working…the problem is we are now on a conveyer belt they have this list of meds we can try and cross them off one by one. In a way I’m greatful that proff did it that way as its given that exta time before I use up another life line - but 3 1/2 years ago there where less treatments around ( taxotere was a brand new wonder drug and herceptin hadn’t been licensed for primary & lapitinib was unheard of) So maybe now I would think about going straight onto an AI.

Oh and by the way I googled what proff smith had told me about tamox and herceptin not working to well together and lots of stuff came up, mainly in medical language, but I’m sure cancer bacup had the best info or the american bcc website…its so long ago I cant remember!

Best of luck
stay in touch
love Amber xxxxxxx