Hi I've just been diagnosed with IBC and have my first chemo treatment tomorrow. Finding it all a bit daunting and feeling very alone. Just thought I would try and touch base with people who have or are going through the same thing. Would love to hear what I should expect. Thanks Jules

Hi The first one feels very daunting - but you will be ok. The thought is probably worse than the actual chemo. Not sure what you are having - I have had TC and coped reasonably well with the after affects, mainly continuing to work. Hope someone is going with you to sit with you, drink lots of water, keep warm and look after yourself. I found several days later I hit the wall and needed to sleep alot. Good luck - you will get there. Several months ago that was me having my first chemo - on tuesday I had my last chemo. So good to be on the other side - you too will get there. I am sure you will hear from other ladies - stay on this site for support and ask questions. Marg xx

Hi Jules Oh dear you are not alone. The chemo, like Marg said was not as worse as we thought, for sure the so call side effect was the body reaction with the chemo drug, and that's why everyone may different. I am waiting for my last dose, which is the 6th one (Hopefully tomorrow cause I catch sore throat, I wonder if it will cause a suspension) However, for every dose, I can't sleep well. I wonder too excited or too worry. Frankly say, the 1st time, I felt excited rather than worry, cause I prepared mentally but not sure what will happened. I got a lot of useful information from here, and the only way is you ease yourself, and keep telling yourself take it easy, think something happy, and then get a wonderful breakfast, and make sure you keep very warm, and hot drinking, this will help the cannulla much easy to go through, and during the Chemo, still keep drinking, and let the kidney work well. After that properly you may not feel bad, even still can drive or had a dinner out. Prepare more fresh fruit, water melon, rock melon, orange, juicy stuff at home to cheer up yourself, ice block or whatever. Don't think too complicated, just let yourself like get a very bad cold and flu for couple months. Take care and cheer up Rosanna

My breast cancer was not IBC but it was classed as Stage 3 locally advanced because of the number of lymph nodes involved. So I understand how scarey this can be. I had a mastectomy, 18 weeks of chemo and 25 radiation treatments. Have just had my 12 month ultrasound and mammo and all is good. Other than being tired some days, life is good. Chemo is daunting to all of us but you will hopefully find that it is not as bad as you think. The chemo nurses are wonderful and so good at settling those first time nerves. We all have different side effects even if we have the same chemo. I guess our bodies are all different and that is why this happens. If you follow the advice of the oncologist and chemo nurses you will be fine. You will probably not feel bad all the time and might find you feel ok a lot of the time. For me (I had my chemo once every 3 weeks) I had a week of feeling like crap, a week where I felt ok (but had to be careful of low blood count and immunity) and then a week where I felt good. It is not easy but you do get through it. It does the job of killing those cancer cells and that is what matters. I found the support of the ladies on here really helpful. You are never really alone with all of us to 'talk' with. Hope your first chemo goes as well as it can. Take care. Deanne xxx

Hi Jules, I've recently finished treatment for IBC. I found the chemo knocked me around a lot more than the other ladies are describing but I got through it. After that the surgery and radiation was a breeze.

Just diagnosed | BCNA Online Network

24 Replies

Fleur_A
Member
12 years ago
I have to say I've had a port put in this year and it's been a god send! Had made life and treatment so much easier, no prodding away at veins. Straight in and doesn't hurt! I hope today has gone well for you xx
Liztay82
Member
12 years ago
A port is a device under ure skin it makes it easier for the chemo nurses to give drugs I'm sure if u needed one they would of told u
Meggs67
Member
12 years ago
Hi Jules I recently finished my active treatment for IBC and now am wishing the fatigue would go away. I guess the first chemo is behind you now and presume you've got the normal IBC path ahead of you - chemo (FEC/Dosetaxol), surgery, radiotherapy, hormone therapy. Where are you having your treatment? I'm through Austin Hospital in Melbourne. A port is a medical device used for chemo, rather than using your peripheral veins and means you don't have issues with veins collapsing. You'd definitely know if you had one. My best advice is listen to your oncologist (everything mine told outlined would happen then happened on the schedule he suggested it would - hair loss, fatigue, pains). Secondly I would say is to stay positive. I know that can be very hard sometimes, but I found staying positive took less energy than being angry and frustrated about the situation. If you feel like you're having a bad day, just let yourself have a bad day and then move onto the next day. I found that having breast cancer made things very clear and simple. You quickly learn who you want in your life, what's important and what's not. Hope things went well for you today and that the next few days aren't too bad. Stephanie
JulesM
Member
12 years ago
Wow! What a lovely surprise to log on and find all these responses. Thank you all. Some very helpful information/advice which I will be following. Haven't got my head around the new lingo yet but will spend some time looking some of it up. Not sure what a port is Liztay82 so I think it's safe to say I don't have one. I shall go to my first treatment tomorrow a little less nervous thanks to you all. Thank you for the tips and the well wishes, what a wonderfully supportive group. I hope I get to return the favour. Much love and thanks to you all. Jules
JulesM
Member
12 years ago
Wow! What a lovely surprise to log on and find all these responses. Thank you all. Some very helpful information/advice which I will be following. Haven't got my head around the new lingo yet but will spend some time looking some of it up. Not sure what a port is Liztay82 so I think it's safe to say I don't have one. I shall go to my first treatment tomorrow a little less nervous thanks to you all. Thank you for the tips and the well wishes, what a wonderfully supportive group. I hope I get to return the favour. Much love and thanks to you all. Jules
jeanbates
Member
12 years ago
I agree with everyone about the 'drinking lots of water' I did this every time before, during treatment and after. It worked for me. I felt sick but briefly but got through it. Tired yes. I noticed my inflamed breast flared up more because of the treatment, this was only on the first treatment...the chemo was working! After that my breast kept settling down and the size and appearance looked much better after every treatment. I am IBC Her2+ six lymph nodes with cancer, had chemo, surgery and radiation. I continue on the Herceptin until the end of the year (9 treatments to go) and on Fermara for 10years. I will be praying you do well also. Much love Jean
jeanbates
Member
12 years ago
I agree with everyone about the 'drinking lots of water' I did this every time before, during treatment and after. It worked for me. I felt sick but briefly but got through it. Tired yes. I noticed my inflamed breast flared up more because of the treatment, this was only on the first treatment...the chemo was working! After that my breast kept settling down and the size and appearance looked much better after every treatment. I am IBC Her2+ six lymph nodes with cancer, had chemo, surgery and radiation. I continue on the Herceptin until the end of the year (9 treatments to go) and on Fermara for 10years. I will be praying you do well also. Much love Jean
Fleur_A
Member
12 years ago
Hi jules, Don't stress about your chemo, going in it doesn't hurt nor react straight away so you'll be okay. I had fec & docsitaxel? And the first lot would hit later that night (felt like an elephant sitting on my body) then second one (changed after three treatments) would hit 48hrs later. I then mastectomy and radiation. I was diagnosed April 13 and had treatment all last year. Had a break over Chrissy and found out March this year it had spread again to more lymph nodes and a few spots on my lungs. I'm triple negative with the brca1 gene and managed to get in to a clinical trial at royal melbourne. I've had five rounds so far and had a scan recently which showed it to be working and tumours shrinking. I say half the time bc is a psychological battle, you'll be fine all day and when you go to bed that's when your mind starts working on you, hard to shut it off sometimes. I handled the chemo really well my battle was the weight gain and hair loss they're the parts that suck! Don't read too much stuff into ibc stuff as each person is different and don't let to scare you, there are plenty of us out there still going strong!!! Fleur xxx
Fleur_A
Member
12 years ago
Hi jules, Don't stress about your chemo, going in it doesn't hurt nor react straight away so you'll be okay. I had fec & docsitaxel? And the first lot would hit later that night (felt like an elephant sitting on my body) then second one (changed after three treatments) would hit 48hrs later. I then mastectomy and radiation. I was diagnosed April 13 and had treatment all last year. Had a break over Chrissy and found out March this year it had spread again to more lymph nodes and a few spots on my lungs. I'm triple negative with the brca1 gene and managed to get in to a clinical trial at royal melbourne. I've had five rounds so far and had a scan recently which showed it to be working and tumours shrinking. I say half the time bc is a psychological battle, you'll be fine all day and when you go to bed that's when your mind starts working on you, hard to shut it off sometimes. I handled the chemo really well my battle was the weight gain and hair loss they're the parts that suck! Don't read too much stuff into ibc stuff as each person is different and don't let to scare you, there are plenty of us out there still going strong!!! Fleur xxx
64Deb
Member
12 years ago
Hi Jules, I've recently finished treatment for IBC. I found the chemo knocked me around a lot more than the other ladies are describing but I got through it. After that the surgery and radiation was a breeze.

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