Brca2 gene, breast cancer, chemotherapy and radiotherapy treatment

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1

Hi, I’m jemma 38years old. Last year diagnosed with the BRCA2 mutation genetic gene. This year after follow up scans from the diagnosed brca2 gene 4 left breast lumps were spotted also a large lump in the lymph node “left side to.” Biopsy confirmed I was stage 1 grade 3 and I went on to have both breasts removed. 26th May 2022 I started my first chemo treatment of EC, 4 sessions every 2 weeks. I’m day 6 and I’m having every side effect possible and it’s debilitating. I’ve called up the hospital and they’ve advised me its because I’m on the strongest dose and it’s that, that’s giving me the more severe effects because its to strong for me. 

Side effects from first session of EC:

Dry mouth

Extreme nausea

Severe stomach cramps

Diarrhoea 

Tiredness

Muscle aches and pains

Weakness/no energy

They will be lowering my dosage for the 2nd session. I’m still very anxious as everything I was told has been alot more severe to the point I was on my bathroom floor for over 2 hours in agony cramping up feeling like my insides wanted to explode. I can only hope this doesn’t happen again. I’m also giving the cold cap ago which is going good. I was told if hair loss or thinning was going to occur that it will around week 3 so still early days. Has anyone else had bad reactions to EC? 

2

Aw love, huge hugs.  I’m so sorry your having a hard time with this. I absolutely understand your anguish right now. 

I was in a similar situation to you, with a diagnosis at 32 of triple positive BC, stage 1 grade 3. I was given surgery, three rounds of EC and three rounds of PACs. Then 12 months of herceptin, rads and I’m on 10 years of hormone therapy. 

Unfortunately, similarly to you I had absolutely every side effect during my first EC and ended up in A&E , I had to use a walking stick , felt shakey for weeks. It was bloody awful. In the end I decided to move on to the low dose pax . My oncologist agreed but I couldn’t tolerate it either. 

I was lucky to be able to benefit from herceptin and hormone therapy which I’ve tolorated so well… I’ll be honest, I felt like a massive failure. So many people struggled through chemo . But I’ve come to realise the risks of permanent damage were not worth it for me and as I’ve tolorated other treatments so well, I can see it’s very individual. 

I would listen to your oncologist and give round two a go if you feel you can. If you struggle again, perhaps see what other options you have. 

For the meantime I found lemonade and salt and vinegar crisps helped with hunger and nausea . Sending huge amounts of love 

Pips xx