Triple Neg, diagnosed 4 wks ago, have had 2 cycles of AC chemo - I wonder what has happened?
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I was diagnosed 17.8.20, saw 2 breast surgeons 18.8, followed by the oncologist 19.8. The rest of that week, I spent daily at the hospital undergoing the series of tests. 24.8 I had the port inserted, 25.8 I had my 1st cycle of chemo, Wed Pegfilgrastim injection.have completed 2nd cycle and this coming week will go for 3rd round (if all goes well). 5.9 port confirmed infected, now they suspect I have internal bleeding from Cyclophosphamide, I’ve lost weight, hair, my ME self. I am self employed and that has suffered also.
Is there a part of your life BC shows mercy to?0 -
I woke up this morning (like almost every morning these days) flooded by emotion and rolling tears; at times, I can self regulate. Connected with cherished family and friends - that keeps me balanced.
Will the treatment worsen symptoms? Or does it basically remain at a stand still?
I have been researching cbd oil for symptom management. Between pharmaceuticals and the underground market, I’m starting to sense the priorities are lining pockets rather than supporting affordable wellness.
Thank you for taking the time to read my posts and comment
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Feel like I’m always exhausted!1
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@tasia I'd like to say this shitty disease has a merciful side. I really would. If it does, I haven't seen it.
Dialogue around cancer tends towards the brave, the battling, the epiphany where people turn their lives around and reinvent themselves. Even those who perish have done so for The Greater Good. I'm going to call rubbish on that.
It's a gritty brutal dehumanising shitfest for the majority of us. Deep!y unglamorous.
After two bouts of BC, a decade apart, I can't laugh without worrying I'll wet myself. I laugh anyway. I was hugely amused by stories about folk stockpiling bog rolls. Anyone who's done chemo knows you may need none for weeks, and then you will need rolls and rolls. I've done the broke and nearly homeless thing--work myself to death or expire in not so gentile poverty?
You could not makes !of of this stuff we go through up, it ridiculous.. And the ridiculous is what keeps me going. This disease does many things, but I like to think it hasn't changed my character--though it has given me more licence to express it on occassions.
Keep plodding. MXX8 -
@Zoffiel - I need to find a way to believe that it will not change my character either. I sit with curiosity and doubt - when the mission of treatment is to destroy the tumour, does it not break down other parts of you? change you?
i went for a walk today and watched people around me - I noticed two things a) people avoid making contact (maybe my choice of bandanas or scarves don’t appeal to them 😜)
and b) how differently I do the walk thing now. Yes, I can still walk but I’ve lost my ability to walk with confidence, strength and energy, to walk kms without concern. To interact with strangers and not so strangers. Covid only adds to the challenge.
“Gritty brutal dehumanising shitfest” I will borrow your spot on description (with your permission) to come up with a visual to match the words 😁 x2 -
It's certainly a roller coaster!
Zoffiel has summed it up well!
There are some uplifting posts on the forum that may help you
https://onlinenetwork.bcna.org.au/discussion/22349/9-years-clear-after-second-triple-negative-diagnosis/p1
Take care and best wishes0 -
Thank you iserbrown. My warmest and best wishes to you also.
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Hi @Tasia, it is such a difficult and confusing time, there is just so much to process on the hop. I was diagnosed in December 2019, and have had chemo and surgery. I too posted at the start of it all and @Afraser gave me advice that I absolutely clung to - ‘as impossible as it seemed, I would one day look back at everything and would struggle to remember all of it.’ Gosh, I can’t tell you how many times I said that to myself.
@Zoffiel nailed it, it is a shitfest, but you will get through it. There are so many people here who will be able to offer so much support. This is going to challenge you and yes you may change, but I guess any life event, good or bad impacts us in some way. Things feel shaky at the moment, but you will get your confidence back in time. You have had a lot to take in and you need time to try and make some sense of it and catch up. In the meantime, be kind to yourself. I am wishing you all the very best wishes as we all walk along this path. There are many helping hands here offering support when we stumble or struggle to navigate the way forward. Mx
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Hi Tasia,Tasia said:Hello, I am not sure how to introduce myself, as this self, is new to me. I feel I havenʻt had time to prepare or make sense of who I am when I look at self. An experience, I have walked into or more precisely, I am on a treadmill of some sort and someone has yanked it up and I canʻt keep up. Emotions running havoc. I am very grateful for support services such as this and give thanks to the community of people who reach out to help each other. For those who read this, thank you.
This is my 2nd time on this treadmill. I was first diagnosed in 2013 with TNBC and had 9 months of full on treatment-surgery, chemo and rads. I was into my 6 year clear and had my usual mammo/us and bingo here I am again. TNBC but in the other breast - what are the odds? Had surgery within a week of getting the results and then had to go back in as they found another tumour but of another type & DCIS to boot. my advice is you will be scared to death and emotions will be high and low but just breathe and ask lots of questions...never feel like you need to make decisions on the spot. Don't sweat the small stuff and remember to laugh!! Good luck, you got this!
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Hi @Mazbeth, did you have AC chemo? May I ask what side effects you experienced? I find chemo fog on starting Day 4, worse day is day 5 where I want to curl up in a foetus position because I feel so disjointed from whatever ‘my normal self’ looked like and managed cognitively emotions flare up and I breathe, self talk, go for short walks, look upwards but still can’t shake off - who is this person walking in my shadow? I have never been a big sleeper and I’m generally an early riser ready to embrace the offerings of the day...now sleep has reduced significantly. Hence, why I am up writing at 1,45am. Listening to soothing music to help find sleep. Oddly my brain doesn’t feel like it’s racing, just awake (toilet breaks, water breaks, temp checks, mouth wash breaks to relief the mouth sores. Then I feel the symptoms of both aches following the white cell injection (pegfilgrastim)
I am told that the 2nd lot of weekly, 12 week chemo is milder yet I have read that the side effects can appear in other brutal ways. I guess there is no escaping the unknown symptom beatings only that this shitfest has crept into our lives and we do the impossible to cope in the most possible individual ways... I’m coming from a place of I just don’t know. What I do not is that this forum and wonderful people helps. Thank you xx0 -
Hi @Jennim, I am deeply sorry to read your 2nd journey on the treadmill. My own hand is shaken but extend it to you x here if and when you need to chat, vent. You’ve got this too x
What I have learned about cancer over the years (not as a cancer patient but career or support friend) is that it enter, exits, and at times rehoused itself in bizarre ways. I lost my mother to cancer..Stage 4/ palliative 14 years ago and many friends over the years (various cancer forms) - some survivors varying from 12-35 years of living life clear and free.
The lens I look through now is my own cancer landscape - and I’m trying to find my way, slow down and breathe it in and out, I feel ill prepared and drawing on all the personal and professional tools in my tool kit..while simultaneously trying to digest additional things as they arise.
I am having a MRI of brain next week to rule out any further nasties.0 -
Hi @Tasia, This is going to be a long one - sorry.
I am sorry that you are on this path and I can totally relate to everything you are feeling. I still have days where I ask myself, ‘what just happened to the life I knew so well?’ However, I want to reassure you that you will dig deep and find your way forward. I heard this saying and it has helped me so much - the speed doesn’t matter, forward is forward. You will get there. I am not sure where you are based, I am QLD so Covid restrictions are not as severe, but I tapped into some support - Look Good Feel Better. I really had to muster up a lot of courage to go as I just felt completely overwhelmed with everything, but it was the best decision as I met a group of girls who are now wonderful friends - the silver lining in the shitfest!
I did 4 x AC and by the 4th round, I was pretty knocked around - could barely get off the couch for 9 days. I was just completely depleted of any energy. The AC builds up each time so by number 4, you are on the mother load. I had a little nausea on day 3, but I took my nurse’s valuable advice - take the meds as soon as you feel even a little twinge of sickness. I think that advice was the best thing. When you have come from a place of never having been to hospital, broken a bone, taken medication to now having a full chemical assault, it’s difficult to understand how you got to this place. Also, those steroids are messing with you and in particular, your sleep pattern. I joked that I could be a 24 hour Uber driver as I just found sleep evaded me. A couple of things I ate/drank to get me through- strawberry smoothies, fruit tingles, cordial.
I am not sure if anyone has suggested taking a Claratine (usually a hay fever med) for your bone aches - worked really well for me. My nurse told me about it and lots of girls do the same.
Chemo takes its toll physically, but I found that the mind game was just as (if not more) challenging. I knew I needed to get my head around everything, so I sought professional help. This helped me to sort through and clarify everything. I too am in a career where we I am used to recommending professional help etc, so I was very comfortable using it too. Cancer Council also offers great services which are free of charge. I learnt to reframe my thoughts to ‘in this moment’ and this helped me to focus on the now and not get too far ahead of myself.
I then did 12 taxol and it was completely different - energy started to return, hair started growing at about number 7, no more nausea. I had steroids for the first 2 rounds (reduced dose number 2 round) to make sure I did not have an allergic reaction. Once I had done 2 rounds with no reaction, no more steroids. You are right though, taxol has its own set of issues that you just need to watch out for. Everyone reacts differently and its hard to say how each person will respond until you are actually having it. For me, taxol was much better, but by the end, my joints (feet and hands) were getting a bit stiff and creaky.
I finished chemo in May, had my surgery in June with the start on reconstruction. I have just started a gradual return to work and I am moving forward - all things that just seemed so hard to imagine back in January. The people on this forum helped me in so many ways. Another piece of advice I got here was that chemo ‘is grotty but doable’ - just so true.
You are now half way through AC - closer to the finish. Celebrate these milestones as you go. I had a calendar I marked off as I went along, but break it down into little chunks. Here’s another quote, ‘when eating an elephant, take one bite at a time.’ Not that we will be doing that, but it makes a good point of tackling a big challenge by breaking it into much smaller pieces.
I am happy to help in any way as you go along, but let’s just get you though this first bit because it is doable and you are doing it. Of course you are going to have days where you get the wobbles and that’s where we will steady you up and dust you off. Sleep when you can and take care. I am sending you a hug and I know you will dig deep, your own strength is going to surprise you. X0 -
Hi Tasia, I was also diagnosed with Triple Negative BC October 2018.
Surgery, 6 months of Chemotherapy, more surgery, 30 rounds of Radiation.
Im now 12 months post treatment and cancer free.
You have got this.
Take one day at a time. I called it my roller coaster ride, your mind and body are up and down all the time, a lot like the waves in the ocean, some are bigger than others.I found that it was best just to go with the flow, listen to your body, rest when it tells you to, don’t fight it.It’s ok to have bad days, allow yourself that, then pick yourself up again and be positive.
Drink plenty of fluids, rest, and light exercise when you can.
If you’re finding it hard to sleep visit your GP and they can recommend something for you, as getting sleep is crucial on how your body is able to cope with things.
I found meditation and doing a mindfulness course helped me through the tough stages.
Keep yourself in the moment , as it’s so easy to look to far ahead and have negative thoughts.
Keep positive affirmations on hand and keep reading them and believe in yourself that YES you can do this and you will get through this will and be a SURVIVOR.POSITIVE, POSITIVE, POSITIVE, is so so important, read those positive affirmations, be around positive people.
You Can Do This.
Sending positive vibes and hugs your wayyou can send me a private message anytime if you want to talk
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Hi @Mazbeth, no apologies needed for the length - all of it is so very much welcomed.
I don’t know of anywhere else where I can reach out at anytime and someone generously touches my hand with personal stories. My heart warms and smiles when I read of your outcome for you xx
Day 4 and the waterworks come on, gently streaming down my face for no apparent reason - except perhaps that I opened my eyes, feel a warm flush. A new experience - just had cycle 3 and another symptom (?).
‘Letting go of known and stepping into unknown terrain, remoulding life like a slab of clay’ is how I am trying to stay positive, focused and forward steps’. Trying is my key word - sometimes I slip but years of resilience and life teachable moments picks me up, it feels weaker, surreal.
I have lived in Brisbane and returned to Sydney when Covid showed up; I chose to become a working gypsy in my career life or more accurately, it chose me. I’ve just become a grandmother again and feel the cancer has taken something deeper away from me - all the drs suggested maintain higher level of distance with covid during AC and try to do the balancing act with family/friend support. Not an easy gig but has been manageable with much creativity.
I have tapped into the LGFG prog but did feel overwhelmed and didn’t connect with others - I wasn’t even connected to self. Smoothies - strawberry blueberry high on food intake and fresh superfood juices when I can. Appetite is all over the shop. I am keeping mobile and find qi gong helpful - do what I can to stay present and in the moment. I work for self and find my mind sneaks away to how that part of life is deteriorated when I can’t maintain my normal level of work. I see my small business crumbling creating other obvious concerns. I hold the dove of hope that my brain city lights will remain stimulated. Cancer NSW have linked me in with counselling and a buddy which I find of great value.
I give much thanks to you for sharing, helping steady my wobbled self xxxx1
