This is my first appointment ever with an Onocologist, and I was just wondering what questions I should be asking about chemo and herceptin.
I was fine about asking things re surgery etc. but not really sure what I should ask tomorrow.
Thanks.
Can I have a chemo buddy to stay with me?
Can I have a PortaCath / central line / something to stop my veins being fecked?
What number do I ring if I have a question/don’t feel well?
Is lunch provided if Im there all day and if not, how do I get food/drinks if I’m stuck to an infusion pump?
Can I have one of those little red chemo books so I can keep a record of my treatments and record SEs?
HI
I saw on the other thread that one of your fears is to be sick. That was my worst fear when I was told I needed chemo, and the first thing I asked the Onc was to give me the most potent and effective anti sickness that was available on the planet! And she did. I don’t recall the name (I am sooo bad with names), but I’m sure someone else here will be able to give you that information. All I know is that it’s very expensive and that’s why they don’t prescribe it very often. But do try and get him/her to prescribe it for you, it was so effective I was never sick nor nauseous.
Deb
Hi SGL,
I got lots of info thrown at me from my oncologist about the types of chemo I was having and what the process would be.
I didn’t ask any questions first off due to ‘head in sand’, but halfway through chemo now, I’ve asked a few questions today of my oncy which may help you set your mind at ease, if he/she doesn’t part with the info voluntarily…
Anti-sick drugs - I found first chemo quite nauseous for me (but wasn’t sick) and they changed anti-sick drugs to a more expensive type (Emend - Aprepitant) which helped for round 2 - you could ask which anti-sick drugs you will get - not sure where you are but postcode lottery can sometimes apply unfortunately…
The chemo room - can you get a look around where treatment is given and how long does it usually take - so you’ll know what to expect before you turn up, may put your mind at ease a bit more…
Hair loss - voucher for wig from the nhs and cold-cap options (I didn’t do as didn’t want the extended stay, can add approx 2-3 hours on your treatment day). I got my wig/scarves early so was prepared and had hair cut short in preparation for the loss…
Parking - does your nhs trust supply free-parking
White blood cell count - are injections given day(s) after chemo to boost your WBC as standard, I get this as standard.
Percentages - what are the improvement chances of having the treatment for you (I only got this info today when I asked).
Veins and potential issues - cannula/PICC/Port - I wasn’t aware of the options and know others have strong views on this area, I’m still on cannula’s currently
I’m sure there are lots of other questions I should’ve asked and still should, but I’m sure there are others who will depart their experience and knowledge for you too…
I hope this helps a little and good luck tomorrow…
He’ll tell you what regime you’ll be on - ask for fact sheets about each of the drugs.
Mine gave me ones produced by Macmillan - they were really useful reference, esp about what SE’s to expect/could occur.
Don’t let the big list freak you out - I haven’t suffered from any of the rarer ones and not all of the more common ones (i was on 3 xFEC + 3 x Tax) and I had my last tax today. In fact my worst SEs were actually from the level of steroids I was given for my 1st tax.
Ask him who to ring with all the questions you forgot to ask!
Good luck!
Sx
As you’re so worried about having chemo why don’t you ask him how much it will help your prognosis? It might help get your head around the whole chemo thing and either accept that it is what is needed as you understand the benefits. Or, if the benefits aren’t as much as you thought, discuss the pros and cons of having it. As I said in my PM, given the choice, even a couple of percent added onto my prognosis and I would choose to go for it - but there are plenty of people on the forum who chose NOT to have chemo.
There is a programme - ajuvantonline - where they can actually show you the benefits of the different treatments based on a pool of women who had a similar sized tumour, number of nodes affected, HER2 status etc. I don’t want to know my prognosis in terms of percentage (too scared!), but I was told that if I didn’t have chemo my prognosis would be very low. So I wasn’t going to argue with that!! You obviously don’t need to ask for the details if you don’t want them - but if he tells you that it will add 10% onto your prognosis, maybe you wont feel so strongly against it…?
x
Oh yes - and tell them all of your fears re feeling sick etc and make sure they give you the best anti-sickness!!
GOOD LUCK!!
x
During chemo - ask what each pre-med is, and get the Dex (steroid) injected VERY slowly or you get “itchy bottom” - it is VILE.
Sandytoes, adjuvant online isn’t a great deal of use for HER2+ ladies as there isn’t enough data in there yet regarding Herceptin, so it’s not really worth looking at (according to my onc, and when he explained why, I was comfortable with that).
SGL, bring a notebook with you to write down everything you are told. Or, bring another person with you whose main job will be to do the writing, so you can listen to what’s being said and not just taking dictation.
Thank you thats really helpful guys xxx
LOL SGL I can probably answer some of ninja’s suggested questions. If your chemo/herceptin takes over 90mins to infuse you will be on the MDU (medical day unit) and they will provide a sandwich/yogurt/fruit for lunch. If it is shorter time you will in the the IV unit and they don’t provide lunch. You can certainly have someone with you. They probably wont give you a line if your veins are o.k. I have never seen any little red chemo books there. They will give you a phone no. to contact if you have questions or are unwell.
I would want to know if the herceptin will be given alongside the chemo, or do they wait until the chemo course is finished before giving herceptin. A question would arise in some hospitals but at the Marsden they are really very good at making sure you have any meds you might need to handle side effects before they arise.
The nurses on both the units are really lovely and caring.
I would say do make sure you have a thermometer at home. If your white cell count starts to fall and you get an infection it is important to know if you are running a temp.
On the whole they seem to be very thorough at the Marsden especially on the chemo units.
Dawn
xx
I got interrupted while I was typing my previous post and when I eventually hit submit there were loads more posts SGL. Lazycat said about anti-sickness pills. I think that is a really good idea to try and lay it on a bit thick about how sick you get and can they make sure you have a really strong anti-emetic.
I think you probably already know you get caught for hefty parking fees at the Marsden 
It might be a good idea to say to the onc that you know you are only having chemo because you have to have it with herceptin. Ask for his assurance that you really are being given a very mild one.
I’ll shut up now 
Dawn
xx
Thanks dawn, I have made lots of notes! Do I ask about the cold cap tomorrow or on the day xx
Ask in advance - on your prelim visit to chemo unit, they’ll measure you up so that they can have the correctly-sized cap ready and chilled for you in your place.
Hi SGL
I asked about the cold cap on my first day in the MDU (where you have the chemo). I just let them know I wanted it when they took my obs and weighed me which gave them enough time to get it organised. Are you going to Sutton or Chelsea for the chemo?
Diana x
Thanks ladies. Just on way now to Chelsea. Hoping to have it done at Sutton so I don’t have to commute on train after.