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

JulesM
Member
12 years ago
Hi Kerry Would love to catch up. Have made a note of your number and will be in touch soon. I'm seeing Nicole Potasz who has been wonderful. I would very much like to here more of your experiences and how you have managed to stay so positive. Thanks for reaching out, talk soon. Jules
KayKay
Member
12 years ago
Hello Jules, How are you doing? I am also a patient at PPH. with Inflammatory BC. My oncologist is Romayne Holmes. If you need anything or would like to meet up/have a walk or whatever please feel free to make contact. My ph number is 0409231591. Best wishes to you, Kerry (KayKay).
JulesM
Member
12 years ago
Peninsula Private, Karingal in Victoria. I shall arm myself with a notebook. Thanks
terri_parkes
Member
12 years ago
That's tough for you Jules. Is that the Peninsula Hospital in Brisbane? I found having an A4 notebook with me everytime I had an appt helpful so I could write down everything as your memory takes a bit of a battering. Write down questions for the Dr in it so you're ready next time you see them. Then write down the answers in your appt. I'm sure your daughter wants to be there for you every step of the way as you would be for her. Take care.
JulesM
Member
12 years ago
Hi Terri The info from the group definitely calmed the nerves and the day of treatment it's self went well. I think I was just in shock and panicking. I received the definite diagnosis on monday and was having my first chemo on Friday, I feel like my feet didn't touch the ground. I was diagnosed with IBC stage 4 so have been told surgery is not an option. I am receiving treatment at Peninsula Private, Chemo is FEC and that's really all I know for now. Not even sure what I should be asking or what comes after this. I have found the support and encouragement from this group very helpful. My husband died just over a year ago (cancer) and I only have my daughter who is wonderful but has a 17 month old son so I am trying not to put too much on her. Thanks again to everyone in the group, I'm sure I will be seeking you advice as my journey continues. Much love and thanks Jules