New to the group

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Hey I'm 36 and diagnosed with triple negative breast cancer when I found a lump a few months ago.

I've now started chemo and immuno therapy each week and at some point next year will have surgery.

Is anyone else going through the same thing?

First week in I am getting awful heachahes they have done lots of checks and nothing wrong but say it's not a normal side effect so have been given some stronger painkillers.

I would love some positive comments on people's similar journeys.

Thanks Sar 

  • Hi Sar

    Firstly a warm welcome to the community. We are a great bunch of people all going through our journey at different stages and different diagnosis and different experiences.

    I had grade 3 HER2 positive tumour in my right breast. Not to bore as it's all in my profile. I had surgery. Lymphodes were clear. I had my 2nd EC chemo yesterday. I haven't had headaches but a different set of side effects.

    We are hear to talk x

  • Hi thanks for your message.
    I'm glad the surgery went ok! Good luck with the chemo what other side effects have you had? X

  • Thankyou. 

    I had extreme nausea that had the rocking boat on choppy seas every time i moved and wanted to be sick. I've had incontinence and constipation but that was down to drinking water to stay hydrated and not eating anything.

    The fatigue was equally as worse. Just washed out and tired all the time. Muscles ached but weren't painful. I'm dying for a hot bath but I can't coz of my PICC line. 

    The hair loss was a big shocker but I have embraced that and even having a bit of fun with it.

    I've never cared what people think or how they looked at me being a little alt but it is the stares if I have a head scarf on or a hat. 

    Can I ask what kind of chemo you are on?

  • Hey Emlee

    Gosh I'm so sorry to hear that ginger ale helps with with the anti sickness tabs also can they up your meds?

    How's the pic line been? I'm getting mine next week.

    Yeah I'm on paxitacel I can't remeber how to spell it lol and carbo somthing lol for chemo them pembro for immunotherapy then will go to ec chemo in the new year they tell me mhow about you  x

  • Hey Sar

    They told me that EC is very aggressive and tough on the body and I agree with that as to what it's meant to do but as they got the whole tumour and the lymph nodes were clear, my chemo is a preventative treatment as my oncotype dx score was quite high. I have 1 more EC and then go to 3 weekly sessions of the Paclataxel. I then will be sitting down with the whole team to discuss anymore before I go to radiotherapy if that's the next step. My plan is very up in the air. I think they want to see how the chemo goes 1st.

    As for the PICC line, I'll be honest and say it wasn't the best experience but I've had it for 4 weeks now and still feels a bit tender at times. I do cradle and protect it as I'm so scared that I will pull it out by accident or someone will unintentionally knock it comes out. It's an irrational fear as it's so far in. I opted for the PICC as it beats 12 cannulas - bloods and treatment. My veins aren't great anyway and I have a huge fear of needles so it was the best option. I would recommend it if it's a long course and not be treated like a pin cushion!!

  • Hi. I had a pic line for my weekly Pacitaxil chemo and at the weekly blood test the nurse fitted a tubi crip sleeve over the pic dressing that protected it from catchup on clothes also a plastic sleeve for showering. Was nervous about getting it done but it was best thing I did.

    good luck with your treatment Xxx

  • Hi Sar87, I have always been prone to headaches so decided against cold capping. After first chemo I suffered really bad headaches for a few days. I also had a phone review after having bloods done, before the second cycle. They told me that my liver function was a bit raised, but I could have my second cycle. Due to the liver function issues I decided to up my water intake. This actually really helped with the headache issue. I didn't get any more headaches after chemo and my liver function has since been fine as well. I actually rarely get headaches at all now, so I think all these year's that I've suffered headaches, has been the result of not drinking enough water. I wish you well on your journey moving forward. Xx

  • Hey skylark

    Hope you are well

    I was given a sleeve and a net sleeve and both irritated. The sleeve kept rolling down despite it going into my arm pit onto the anchor part and that caused pressure.

    The net sleeve kept catching despite the clip and tube being covered with gauze and tape so I just have the dressing the nurses apply.

    If I sleep on my right side then I put a pillow or a neck travel pillow, either works tbh, on my left upper body to rest my left arm on it but if I need to sleep on my left side (the PICC is in my left arm) then I just lay a pillow on the bed and rest my arm either flat or at a 90 degree angle. Helps having a big bed and a hubby that swap sides if it means getting a good night sleep lol

  • I'm sorry yours seems up in the air I hope you will get clearer answers soon!! Heart️ thank you for that advise I really appreciate  that. I wilk be the same I've very causious about things catching like that but the same as you they struggling to find veins. I really wish you all the best xx

  • Thank you so much!!I will make sure I ask for a cover or something then.

    I've seen the shower things but until I know where it was goingbti be I didn't want to buy one yet. I really appreciate that yes thank you and you HeartHeart