I'm starting second line chemo on Friday, I'm nervous but at the same time just want to get cracking!
First line was two years ago and I remember having to take lots of Steroids the night before the chemo, is this still the norm? I've not been issued with any and I'm stuggling to contact anyone to find out if I need them. Things seem to change so it may just be the new norm, I will keep trying to contact someone but thought I would run it past you experts!
I'm having Chemo at home this time through Heath Care at Home, has anyone any experience of this?
Hoping for sunshine for the weekend, are any of you up to anything nice?
You sound like you may live in the USA. I live in the U.K., and we get the steroids in the day of our infusion. We take the for 3 mornings after the infusion, also.
My sister lives in LA, and she gets the steroids the night before and just 2 mornings after the infusion.
Best if luck on this your second line. Drink loads of fluids!
Thanks for the reply, I live just outside of Newcastle in the UK. I had my first Chemo at the Freeman, Northern Centre for Cancer Care.
Ah so you got your steroids on the day, that may make more sense then, I do know that things change, they try one thing then another. I used to have to take six tablets 12 hours before my appointment time then 6 six hours before my appointment time, I'd have to set an alarm. On the day makes more sense.
Thanks for he good wishes Laura, where are you based? Really sorry to hear both you and your sister have been effected by Cancer. I hope you are both coping well, sending you good wishes.
In Germany, I got the first dose of Dexamethason via IV on the start day of chemo (day one)... and 2 more tablets which I am to take on the mornings of day two and three respectively.
I don't know why they didn't give them to her prior to the reaction. We thought it was probably because she moved before treatment so different authority. They prescribed them for her last chemo, because it was during my wedding and for number 4 (after the reaction) but not 5? Very strange.
My mum is ok thank you, end of chemo scan today, results next week x
Hi. First line, I had steroids infused on chemo day then three days after by tablet. Second line started out the same but had adverse reaction to carbo so for following chemo steroids started two days before on tablets, infusion on day thentablets for three days afterwards. It seems to depend from area to area. Hope you get on ok. Jo 🌼🌹🌸🌻🌺
Hi Lias, Like the other ladies I had mine on the day and then 3 tablets for the next 3 days, this worked out well as I had a apart time job and the steroids helped.
All the best for your treatment Take care Lorraine xx
Both first line, and second line they gave my mom steroids to take the night before, and morning of, but they still gave my mom some during treatment too. But this was only for her first treatment, all other ones they just give it to her at the hospital as part of her pre-med concoction.
The steroids apparently help with nausea and give you an appetite, among other benefits. The downside is they really raise your blood sugar a lot, and if you're diabetic, you'll need to manage this. My mom is diabetic, and her numbers shot up like crazy, and lasted that way for the first day or two after treatment. I actually believe my mom became diabetic as a result the steroids from first-line. I had no idea that could happen, but steroid-induced diabetes is a thing if you google it.
Which combo are you having this time? When I had carbo/taxol, I took steroids on Day -1, 0, +1. When on carbo/gem, I had them for days 1-3. Different pattern for different drugs.
I’m having Avastin via HC@H and they do bloods at home the day or two before, get the results to the oncologist for review, and if all OK, come out to you on chemo day. They bring *everything* with them. I normally choose to have the infusion in my dining room because it’s a hard, flat floor for the drip stand, but that’s my preference. It’s a good service and you are well looked after.
I hope your trip is going well, although it looks like your body clock is a bit off! Our son comes home on Saturday and has had a blast! He’s bought lots of hats from the villages in Epcot, not sure what we are doing with those!
I’m having Carbo/Gem/Avastin, thank you for taking the time to message, your reassurance re having it at home is super helpful!
I am in the same boat as you and on second line of Carbo/Caelyx. I had to have the first two in hospital due to the possibility of an allergic reaction, but I am having the next four at home with the Healthcare at home nurses. I had this service for my Avastin treatments (21 in total) and it worked well. I found I had a favourite nurse, stuck with her and she is coming back to doing my next treatments. If you get one you really like, try and stick with them or ask for them. You get to know them pretty well as they come to do your blood test a couple of days ahead. This gets taken to the hospital and then the results given to your oncologist who then orders up your treatment.
Do you have a port? This became necessary for me as my veins became very stroppy after 18 weekly chemo sessions. I have always been given the steroids just before treatment and then some to take afterwards.
A couple of pointers, they often come long distances battling through rush hour traffic so occasionally can be late and sometimes they have to wait for the chemo to be delivered to them. You need somewhere quiet and comfortable in your house to do the treatment and where they can set up the stand etc. They give you a book where they enter all the details of your treatment and blood results etc. All in all it is good service and avoids the need to drive to the hospital, park, and have someone with you to drive you home. Obviously it is different from hospital though and you won’t get your oncologist dropping by to see how you are getting on.
I do hope you get a lovely nurse and all goes well for you.
Hi Sophia, thank you so much for taking the time to reply. The more I hear about the healthcare at home the more comfortable I’m feeling.
The advice about the nurses is particularly helpful.
How are you feeling now, is your treatment going well? How are you finding the port, I don’t have one but understand the need may arise, I’m a little nervous if this.
I am getting on really well, thanks for asking, managing to do my yoga classes which help my body and brain. The week after chemo is always the hardest, obviously.
Hopefully you won’t need a port, the problem arose for me as I had the 18 weekly chemo sessions followed by the Avastin and my veins were shot. As you only get one nurse coming they don’t like doing more than two tries at getting a vein, hence having the port. I then kept it in knowing I might need it again. Your veins should be fine, and actually mine have recovered a bit in the 18 months since finishing Avastin. My port is no trouble apart from needing flushing every 4 weeks after treatment.
With my first 2 lines of chemo, I was only given steroids on chemo day, before the infusions were started. The last time, I had them for 3 days afterwards as well. Di
HI Lisa--I echo what others have said --I had the night before, the morning of (tablets) then in the infusions on the day of. I asked why so much and they said so that they could suppress possible allergic reaction to the Carbo. They told me it could happen with any of the treatments although they did seem more relaxed about it after the first two treatments when nothing happened but I had to continue through all six cycles (and like others, the next four days to hopefully not get sick and also not to "crash").
Good luck and so glad for you that you can have the infusion at home. I think I have more hours in waiting for treatment than for treatment itself at my clinic.
Thanks Judy, Well I had my first treatment this morning starting at 8.30 sharp and it was very easy. Steroid infusion before all of the others then steroid and anit sickness tablets for the next two days. We will see how I get on.
I know steroids did help me greatly last time and I really didn't have such a bad time at all. Hoping this will be the same.
Hi, Lisa! You are correct...everything changes so much! I had my first round of chemo in 2015 and don't remember any steroids being given to me. Just benedryl, Pepcid for the tummy and adavan for the nerves.
Had recurrence 2 months ago and the nurse told me that steroids were added to my drip pouch. Good thing she told me since I didn't sleep next two nights but felt like a million bucks. Lol. Went for my second 3 weeks ago and there was no mention of steroids. I forgot to ask. Today I am going and will ask about it. And get back to you.
That is a GREAT idea about having chemo come to you in your home. I travel one hour to yale new haven. I actually live close to a facility in Greenwich CT but I have gotten use to the great folks in new haven.
I’m wondering too, I had them initially for 2 days but was upped to 3 to reduce leg pain first line. It helped hugely. I didn’t have any side effects coming off when I had finished. Some questions for you to ask this time! I’ll be really interested in your response. Xxx
Glad you mentioned the leg pains. I had them after second chemo this time and no steroids. I will let them know after asking my questions. I always forget everything! Now I hope they do give to me. Leg pain is just horrible. I
Now that I am reading everyone's responses I'm scratching my bald head wondering why I wasn't given steroid pills for 3 days after? I know you have to get weaned off the stuff gradually. Hmmm.
I'm doing chemo for 2nd recurrence & I was given steroids IV 30 mins prior to chemo infusion at infusion center. I am getting Carbo. However, for my first go around, I got Carbo & Taxol. I had an anaphylactic reaction to Taxol the first infusion so from then on I took oral steroids at home 24 hrs prior, 12 hrs prior, and 1 hr prior, to infusion. I picked them up at pharmacy & took them at home. They also gave me steroids IV at infusion center. Talk about not sleeping! I had forgotten how they keep you awake & wired. Good luck to you!
Haha, memories flooding back of sleepless nights! Thanks Terlizzi24. X
I absolutely hate steroids.
My earlier experiences were on the day with the infusion and then several days after, which I reduced and also beat them down to a smaller dose.
Since my third line of chemo, I have to have carbo on a desensitisation regime and have to take them for a couple of days before. Were it not for dear friends in Australia, with whom it's a good excuse for a chat, my nights are a nightmare.
Like so many things, we are beginning to realise, dishing it out in anticipation of problems that only some of us will have, seems to me to be irresponsible (a bit like antibiotics in animal feed). Surely, it's far better to take action when the need for it is demonstrated. And possibly cheaper too!
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Hi Mac27,
It's funny isn't it, we all react so differently and have such different experiences during the course of our treatment.
I had to have my Steorids upped after my first round of first line treatment, another day was added from two days to three, I had a lot of bone pain. One extra day of steroids made such a difference, at the time my son was 10, I would have given anyting for him not to have to see me in such distress.
This time I am starting with two days again and I'll see how I get on. fingers crossed two days will do the trick, I'm at work next Wednesday so need to be up for that! xx
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