Anyone had to stop their chemo ?

Brooklyn16

Hi All 👋

Just wondering if anyone has travelled a similar road to me ?
Had ILC Oestrogen/Prog +
HER2-ve
Grade 2, Stage 3. Infiltration into 2 sentinel lymph nodes. Axillary clearance with remaining nodes clear.
Tumour 6.5 cm. Margins not totally clear after two surgeries (wide local excision followed by mastectomy and ALNC). Will have 5 weeks of Radiotherapy after chemo.
Commenced AC chemo early Jan 2020. Became Neutropenic after 3rd cycle requiring admission to hospital. 
Responded to A/B therapy but then became extremely short of breath on mild exertion post discharge and generally unwell with intractable headaches. Head CT performed and was clear.
Diagnosed with a UTI, pneumonitis, exacerbation of existing sinus tachycardia and a Troponin leak. Readmitted for 5 days under care of my Onco, a Cardiologist and a lung specialist. Had a Bronchoscopy with lung washes performed whilst in hospital. A/B's via Port. Echocardiogram appeared OK but all concerned re my Troponin leak. 
Discharged on sliding scale Prednisone for breathlessness. Began to improve once home but my Troponin level continued to rise.
Had a rigor on the evening of 13th March (Friday the 13th !!) the evening before our daughter's wedding 😢Spiked a temp of 40.2  Readmitted to hospital. Blood cultures unable to determine source of infection. IV A/B's given with effect. I was not Neutropenic. Discharged after 3 nights and have been OK until now 🤞
Troponin stabilised. They felt the Doxorubicin was responsible for the elevation in Troponin. Am now on two Beta blockers for sinus tachycardia. 
I was unable to have the last round of the AC chemo, therefore only got 3 rounds in. My Cardiologist does not want to risk permanent damage to my heart with any more Doxyrubicin.
Had to have 10 weeks in all off chemo after 3rd round of AC. Re started chemo (Paclitaxel) last Tues and have my second session tomorrow (12 weekly cycles in all). So far so good 🤞
My worry is the extended break between my two chemo cycles. How will this affect my overall prognosis 🤔 Can't seem to get a straight answer apart from "these things happen" "can't be helped" I know this, but these comments are not an answer to my question 🙄
And also....how does not being able to have all 4 cycles of the AC impact on my prognosis 🤔
Would appreciate any feedback from anyone who has experienced similar.
Much appreciated xx

Riki_BCNA

Hello @Brooklyn16 and welcome. It sounds like you have had a very torrid and difficult time with chemotherapy and hope you are now recovering well. Please do not hesitate to contact the BCNA Helpline if we can support you in any way on 1800 500 258

PV123

Hi @Brooklyn16

Sorry to hear that you have had such a difficult time with chemo.  I had weekly paclitaxel and now I am having three weekly herceptin infusions till September for HER+ BC.

While I have not had to stop chemotherapy, I have previously read on this forum that some ladies have had to stop their chemotherapy due to adverse effects.  I hope some of them are able to give you some information.  

Take care and best wishes for the rest of your treatment.

ddon

You have endured an awful time, and I am so impressed that after all you have been through you have gone back for paclitaxel. I don’t have any answers.  I just want to send a hug and wish you all the best for the weeks ahead. AC is a miserable cocktail but paclitaxel given in weekly doses is so much better. Xx

Shellshocked2018_

Hi Brooklyn16, I myself didn’t have to stop chemotherapy, but the last dense dose AC was reduced due to neutropenia after each dose.
But I was having treatment with another lady at the same time and she was unable to receive her last dose of AC due to illness, and she also didn’t finish Pactlitaxel due to health issues.
Dont be to alarmed this does happen to other people.
I know that this lady has been given the all clear at her first yearly mammogram. I hope this gives you some peace of mind.
You have been through the wringer, you have got this!
Stay positive 
sending hugs xx

KatyJoy

Hi @Brooklyn16,
reading your story, I noted a lot of similarities to my own, so maybe my experience may help reassure you.
I was diagnosed with G2 IDC 9.2 cm stage 3, er+pr+her2-, Invasion into 2 auxiliary nodes, remaining 22 nodes clear, in Oct 2016.
I started chemo pre surgery (neoaduvant). I tolerated 3 cycles of FEC (1 cycle every 3 weeks), but developed severe tachycardia (very fast heart rate) chest pain and shortness of breath after my first cycle of Docetaxel. I was admitted to a hospital in coronary care, and remained in for a week. I saw a cardiologist and started a medicine called metoprolol to slow my heart rate. Once this stabilised, the oncologist decided to give me my second of the planned 3 cycles of docetaxel. Unfortunately, my tachycardia got worse despite the metoprolol, and I ended up back in hospital with an abnormal heart rhythm, and very unwell. My oncologist then decided that the risk of giving my last dose of docetaxel outweighed the benefits, so we stopped my chemo, and I missed the last dose. I was vey scared as I was worried it would lessen my chance of survival. I then went on to have surgery (double mastectomy) and radiotherapy. I am taking letrozole for 10 years as a preventative, however, I am vey well, and now back working full time 3 years down the track after finishing my treatment. My heart function returned to normal after 18 months and I stopped the metoprolol. I wish you the very best with your treatment.
Kate x

ChezaH

KatyJoy said:

Hi @Brooklyn16,
reading your story, I noted a lot of similarities to my own, so maybe my experience may help reassure you.
I was diagnosed with G2 IDC 9.2 cm stage 3, er+pr+her2-, Invasion into 2 auxiliary nodes, remaining 22 nodes clear, in Oct 2016.
I started chemo pre surgery (neoaduvant). I tolerated 3 cycles of FEC (1 cycle every 3 weeks), but developed severe tachycardia (very fast heart rate) chest pain and shortness of breath after my first cycle of Docetaxel. I was admitted to a hospital in coronary care, and remained in for a week. I saw a cardiologist and started a medicine called metoprolol to slow my heart rate. Once this stabilised, the oncologist decided to give me my second of the planned 3 cycles of docetaxel. Unfortunately, my tachycardia got worse despite the metoprolol, and I ended up back in hospital with an abnormal heart rhythm, and very unwell. My oncologist then decided that the risk of giving my last dose of docetaxel outweighed the benefits, so we stopped my chemo, and I missed the last dose. I was vey scared as I was worried it would lessen my chance of survival. I then went on to have surgery (double mastectomy) and radiotherapy. I am taking letrozole for 10 years as a preventative, however, I am vey well, and now back working full time 3 years down the track after finishing my treatment. My heart function returned to normal after 18 months and I stopped the metoprolol. I wish you the very best with your treatment.
Kate x

Thank you and so glad you are feeling so well now xx

OnNett

I stopped paclitaxel. I completed 11 of 12 weeks. I was admitted to hospital at week 10 for anemia and tachycardia. Week 11 I had adverse immune response, it seemed my body had developed an allergy to the drugs. The oncologist decided to skip week 11 and next week I start AC fortnightly cycles (x4). As people have said paclitaxel is more gentle and AC is more aggressive, I don’t see how I will get through 4 cycles. For the last 3 of paclitaxel I was treated for shortness of breath, tachycardia, and anemia. 

Afraser

Dear @OnNett
Interesting that you got tachycardia - I did too, half way through paclitaxel but the general view was that it was more likely to have been triggered by the A/C I had before. Apparently slow heart rates are more likely with the taxanes. But I loathed paclitaxel - I got peripheral neuropathy (no
doubt what caused that), lost my tastebuds, bloody nose. Apart from losing my hair, I was fine through A/C - no nausea, fatigue etc. in fact, if it didn’t cause the tachycardia, I felt and was fine! So don’t despair ahead of time - it may be much better than you think. These things are so variable! Nearly eight years on, I am really good - keep going, keep your chin up and always ask for help , suffering in silence is never a good idea. Best wishes. 

Locksley

Hi @Brooklyn16
Sorry to hear you are having such an awful time.  Sending you hugs xxx.   I have finished 4 rounds of AC. I am now having Paclitaxel weekly.  I feel like this one is worse. I get blood noses.  Bowel movements that have me dashing for the toilet.   I was trying ice therapy for my hands and feet to try and fend off peripheral neuropathy (saw podiatrist on Saturday and she said the chemo is killing my toe nails.  Both big toe nails are lifting.  Had to get them cut a long way back quite painful).   I have terrible shortness of breath now. I was trying so hard to walk every day even a little walk but now I am buggered.   My dog thinks he is being ripped off when I can only manage a walk of a few houses down our street and back home.    I am now getting headaches and am dizzy and light headed.  Dont sleep very well and quite frankly I feel so over it all.    

ChezaH

Locksley said:

Hi @Brooklyn16
Sorry to hear you are having such an awful time.  Sending you hugs xxx.   I have finished 4 rounds of AC. I am now having Paclitaxel weekly.  I feel like this one is worse. I get blood noses.  Bowel movements that have me dashing for the toilet.   I was trying ice therapy for my hands and feet to try and fend off peripheral neuropathy (saw podiatrist on Saturday and she said the chemo is killing my toe nails.  Both big toe nails are lifting.  Had to get them cut a long way back quite painful).   I have terrible shortness of breath now. I was trying so hard to walk every day even a little walk but now I am buggered.   My dog thinks he is being ripped off when I can only manage a walk of a few houses down our street and back home.    I am now getting headaches and am dizzy and light headed.  Dont sleep very well and quite frankly I feel so over it all.    

Sorry to hear you are having an awful time of it, I had lots of issues with AC and could only do 3 out of my 4. With Paclitaxel I had a 3 week break then finished the last 2 treatments. Hang in there you can do it. sending hugs xx

Shellshocked2018_

Hi Locksley, 
Hang in there.
Keep your nails short, both hands and feet and use moisturiser.
This is common loosing nails with chemotherapy, must keep cutting them as they grow.
It will take quite awhile for them to get back to normal, but they will.

Shortness of breath, I still get that at times post treatment depending on how hard I am pushing myself.
We have to be kind and gentle to ourselves, this is a process which will take its course, it will get better xx