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JulesM's avatar
JulesM
Member
12 years ago

Just diagnosed

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

24 Replies

  • 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

  • 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
  • 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
  • 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.

  • 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
  • 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

    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

     

  • 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