which chemo

Hi, 

When I had my chemo in 2016 there were not so many variations for bc. Usually people had 6 doses....3xfec and 3x t. But as you will have realised, since then ( and it's only 3 years) so much has been developed. Just as I was finishing, the f drug was being left out of the Fec as it was noticed that it was a harsh drug and didn't seem to make a lot of difference to the end result.In addition, nowadays it's quite common to have 8 doses...4 of one and 4 of the other. Some oncologists reduce the drug percentage to reduce the side effects. There have been developments in hormone inhibitors too. I have noticed that the way they are given varies from place to place. Oncologists obviously take individuals into their decision planning. 

Of course there are side effects for all the drugs but how your wife reacts to them will depend totally on her own body. You will read  those who are affected by one and not another. Those who barely have anything other than a little nausea and tiredness and who are back at work in days and those who are physically sick through most of the six doses. For some the drugs can get progressively worse while others find it gets easier.

In preparation my unit gave me a prescription that would cover all possibilities......if you don't have that and want to stock up, these included a thermometer ,anti sickness pills, laxatives, imodium, paracetamol,  mouth wash. I would add ginger infusions and glucose to the list in case of sickness. Obviously I didn't use everything at once but over the 20 plus weeks, I had used almost everything. But I stress again, your wife may not need them. We are all different. What is most important is that however she feels, she shouldn't feel guilty about it. Occasionally on here, because in an ideal world we shouldn't have to feel so rough and there ought to be things that can control it, a post may suggest that if you feel really sick you should get the doctors or bcn to do something to prevent it next time. This is not always possible. I'm afraid if you react badly to the drugs in some situations,  that is how you react.......the important thing to remember is that chemo only lasts for a relatively short time. Every bad day is a day closer to the end....a day closer to being recovered. I am hoping some of the changes in protocol mean that reactions are less severe than when I had my chemo. Certainly reading the chemo club post every day, it looks as if it is a bit easier for many of the ladies........But at its worst, I am still here four years on with no cancer to tell you about it. It is a distant, although unforgettable memory, and in years to come your wife will find herself in my position, able to explain the procedures and knowing that however these next months pass, they fulfilled the purpose.

Once you see your oncologist on September 16th, I'm sure you will feel more knowledgeable and confident about your wife's actual situation.  One thing is certain......she is going to need your support and will appreciate how much you are trying to make things easier for her in advance.

Take care.Perhaps you could something nice over the weekend  or the next few days to take your mind off the worry and distract your thoughts?

Love Karen

thank you Karen,

great to read your past experiences Karen and great that your out the other side and free from cancer.

i will take on board all the advice you have given, every snippet i get is helpful and so is the passion in the way it's given, from everyone here.

take care Karen, x

we went to see the oncologist today and chemo will commence within 3 weeks.

lovely bloke and very down to earth and the point of contact nurse was also great too.

during the discussion, i asked about the Herceptin and he sort of said or at least the way i heard it, that this will commence 4 weeks after the 6 x 3 weekly chemo finishes, id been under the impression that it ran alongside the chemo, after the discussion we went and had a chat with the nurse and she sort of implied, Herceptin ran alongside the chemo.

he had i believe implied this was to do with her addisons disease but i really might be getting this all wrong.

he also said that she should stop her hydrocortisone tablets for 3 days after the chemo because she will be getting a very high dose of steroids and taking her normal tablets could cause overdosing the steroids, im not sure this is right and have written to her endrocologist to get him to clarify, the oncologist did say he didnt know that much about Addison's disease.

stopping hydrocortisone can be potentially life-threatening

my understanding is the hydrocortisone replaces the cortisol the body doesn't produce due to the adrenal glands not working and is not the same as "just a steroid" im not saying he is wrong but just doesn't sound right too me.

i doubt theres anyone here that would understand addisons in detail but maybe there is.

my wife declined the picc line but we think she has made the wrong choice, more chance of leakage with a canula and then potential problems, picc line we need a 50 mile round trip each week to have it flushed and cleaned.

so 3 questions if you can help me with.

1, is it normal to have Herceptin after chemo or should it run alongside the chemo and continue for around 5 months afterwards.

2, does anyone know the protocol for chemo and addisons disease

3, picc or canula pros and cons please.

tia x

Think carefully about the picc line , it does protect your peripheral veins and stops the difficulty ( sometimes ) of finding veins over months . You don’t need to do a long drive to get it flushed / checked. , your GP should have someone to do it , or even come to your home ! Best wishes 

thank you puzzler,

i will speak to our gp inhouse nurse (stroke) doctor as she is very very helpful, it was she who found or confirmed the initial lump.

i think my wife opted for the canula but thought that was the PICC line if that makes sense, i don't mind the 50 mile round trip, just whatever is best for her, be ideal if its cleaned locally but our surgery is refusing to do bloods for my wife's  addisons as there not being paid for it(my head bangs against the wall a few times).

thanks x

Hi

my story on my profile if you haven't already then fill one in for your strong lady then people know your story .

So as you will see very quick diagnosis then masectomy within 8 days .Everyone treatment can be different because there are so many combinations also pre excisting conditions . I have a IBD ( minor compared to addisons ) meds have been withdrawn but seem fine .

My plan had included Docetaxel along with EC but Docetaxel withdrawn because of IBD . 

EC x 6 then herceptin x 18 most prob with break because of xmas .

Continue asking questions until you feel comfortable that you have all information .Ask the oncologist to liaise with Addison team .

keep coming on here best place for help and support 

thank you Margaret,

they have requested info and help from the endocrinologist and so have i again tonight, i did this 10 days ago as well, hopefully, the second email will get him moving a bit, for one i dont want it too slow things down but on the other hand i want it done as safe as possible.

xx

Hope you Get them talking to each other and you .I am lucky and now realise I live in a good NHS area ,but know not the same everywhere . 

I went to Gp to update him mainly because I had received a letter from Gp practice signed my Gp .whilst in hospital after op.Saying how sorry he was to hear news and was there If I needed him .

When I asked best thing to do when coming off bowel meds he was honest enough to say The IBD professor who had treated me was best person .Not enough time for appointment so Gp would do a  Email - Consult . He then phoned the next day with the professors answer .also both dept would Liase when necessary. Perhaps your Gp might get answers for you 

best of luck x

thank you again, Margaret,

i have dealt with the endocrinologist and my gp via phone over the past 3 years, im fairly clued up on the addisons and the gp generally lets me tell him whats needed "quite odd i know" but he does.

the endocrinologist is a bit aloof and always too busy to get back too (probably dont want to hear me woffling) but once i get him on the phone, he listens. he realises i understand much of this condition  "we only see him once a year" much of addisons is suck it and see really, every patient and every day is different, im quite obsessive with understanding what, why and how and spent a lot of time fully understanding it, now i have to start with this condition.

i can't stop myself its just the way i am, my wife just lets both this and the addisons treatment go over her head, because she knows i'll understand it and help, but this time i can't stop it, i cant alleviate what's too come, its so hard on on your head but we'll get there.

im bleating now so i'll stop but thank you for your advice its all taken on board and really appreciated.

i hope you are well xx take care.

Hi

Can only help with 2 out of the 3 questions but here goes...

1.  My diagnosis is very similar to your strong lady's and Northerner's too but I'm a couple of cycles ahead. I had my 4th FEC chemo on Monday.  My treatment plan is 6 FEC followed by a short bout of radiotherapy and 18 Herceptin on a 3 week cycle. As far as I'm aware the Herceptin and radiotherapy will be started at the same time but that's only a vague notion. The radiotherapy was added (I think) because I didn't have very good margins with the tumour being 117mm so very close to my chest wall.

3.  I wasn't offered a PICC line but have had no real issues with the canula approach so far.  I did have to go into hospital one evening because of a high temp and they gave me intravenous antibiotics but the nurse struggled to fit the canula, took about 6 attempts which was painful and upsetting but the chemo nurses I've had haven't had any problems at all.  They seem very skilled at it.  Sometimes they will pop my hand into warm water or place a warm pad over my hand first which certainly helps to pop out the veins.  Just one thing I will mention is to make sure they always use the good arm and not your strong lady's at risk arm.

Glad things are moving for you now and hope both of you come through this with little problems.  The worst bit is the waiting and not knowing what to expect.

XOXO