Change of regime- anxiety increasing

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Hi all, 

Hope this Monday treats you well

TNBC diagnosed back of May 2023 29mm grade 3,  12 weeks 4 cycles weekly of carboplatin and Paclitaxel with 3 weekly pembrolizumb. Very lucky for side effects to be minimal. 

(The menopause is giving me more jip, I am 43 if your interested ). 

Latest scans show tumor down to 16mm, lymphnodes and genetics results back clear.

Whilst I appreciate everything appears to be going well (physically) my mental wellbeing is taking a battering and I am so het up about the change in regime to;

EC  & Pembrolizumb 3 weekly for 4 cycles. It's only 4 I keep telling myself all completed by 15th December. 

I am tired, I have had enough and I am now feeling a tad sorry for myself. But it's only 4 more! 

Is there anyone who has been or is on a similar regime and had a switch. How did you cope with side effects (physically and mentally). 

It's the fear of the unknown again..... 

  • Hello Taffy7919

    I hope you do not mind me responding as I had a different type of cancer to yourself but I did have paclitaxel/carboplatin chemotherapy for my cancer last year. I hope that by replying it will bump your post and someone with the same treatment regime as you will see it and respond. 

    I am sorry to read of your journey so far. Having a diagnosis and then the chemo and other treatments is hard. I remember getting to the end of my chemo last year and just felt very low and fed up and I had a couple of weeks before needing to start 5 weeks radiotherapy. The change in treatment and the feeling of how much more lay ahead was tough. I did think at one stage I wouldn't be able to cope with it and I can understand that you are feeling like you have had enough. I always think when you are tired it all feels worse as well.

    I think if you look back, as I did at the time, you will see how far you come and that this next bit is what needs to happen for this stage of your treatment to be completed by Christmas. You are on the home straight now and on the count down. 4 more. Cross them off as they happen. It's what I did and it helped. I remember getting my appointments through for radiotherapy and they were on two sides of A4 and I took great pleasure in crossing them off, 1 by 1 until I got to that last page.

    I will pop a link to some info about the new chemo in case it helps.

    EC Chemotherapy | Macmillan Cancer Support

    Do you have a understanding CNS that you can talk to? Although you have found that things are going well physically, it is very normal to feel like you are struggling a bit mentally. Cancer treatment is hard. I found on chemo days I did chat to my nurses and it did help a lot. There is also counselling available through Macmillan if you feel it would help. At my hospital they also had counselling support available at short notice. Maybe ask your CNS about it if you feel it would help. 

    If you feel talking to someone else would help then please do give the Support Line a call (Number is below) and they are lovely on there. They can also have a look for you to see if there is any local support available in your area. 

    I wish you well with the rest of your treatment. 

    Jane

           

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

  • Hi  

    I've been through the same regime as you, I started treatment in Feb 2023 with a 22mm tumour and lymph node involvement (in 2 nodes).  I'm now post surgery and will soon be restarting adjuvant (post surgery) immunotherapy (Pembrolizumab).  I'm happy to share my experience, but I would just say there is a group for diagnosis and treatment for TNBC - https://community.macmillan.org.uk/cancer_types/triple-negative-breast-cancer-forum/f/diagnosis-and-treatment

    then select Pembrolizumab, or go straight to this link https://community.macmillan.org.uk/cancer_types/triple-negative-breast-cancer-forum/f/diagnosis-and-treatment/249162/pembrolizumab-keytruda

    and you’ll find insights and advice about this treatment regime.

    It's great that you've done so well on Pac/ Carbo/ Pembro- be proud of how far you've come already. Relaxed

    A summary of my experience- I did really well on Pac/ Carbo/ Pembro but prepared myself for EC to be tougher for me- and it was.  I was more fatigued on EC and my neutrophils plummeted- which meant one overnight stay in hospital.  I also lost a lot of hair. I developed phlebitis (vein swelling) in my arms- but this was because I didn’t have a PICC or Port.

    However, the fatigue wasn’t constant, (I still carried on working), my neutrophils picked up and I had a wig/ hats at the ready for the hair loss.  I got through all 4 treatments.  The phlebitis was the toughest thing, so I would always say have a PICC or Port for EC, as Epirubicin is very harsh on the veins- you may already have this sorted Slight smile.  I got through it and as with all our treatment, you just need to report any side effects so they can be checked out. 

    Not everyone has a tough time on EC, but I did, there were some difficult days when I questioned if I could continue, but when it ended I was proud that I’d got through it all and could then just take a break to recuperate before surgery. 

    My approach has always been one day at a time, one treatment at a time looking too far ahead for me was not helpful- I would be too overwhelmed.

    I’m doing really well now, had surgery on 31st August 2023, (mastectomy of affected right breast) I chose this option as in addition to TNBC I have a PALB2 gene alteration- which increases the chance of it coming back.  And the wonderful news I had post surgery is that I had pCR (Pathological Complete Response)- no cancer in the breast tissue or the lymph nodes.  I was amazed as my MRI prior to surgery still showed an 8mm tumour.  So, I am so pleased that the chemo and immuno have done their job!

    So that’s my story.  It wasn’t easy on our regime, but I came out the other side with a great outcome.

    I hope this is helpful, but as I say do have a look at others stories on the link above- everyone is different and you’ll have your own story along the way too which I'm sure will vary from mine.  

    I wish you so much luck with it all.  And sending lots of love xxx

  • Hello Taffy7919

    I wanted to reply to you as I have TNBC diagnosed back in March. I am 44 & on exactly the same regime as you and recognised myself straight away in how you are feeling.
    I have just finished my EC chemo last week and am awaiting surgery in November.

    I totally understand how you are feeling and remember feeling exactly the same. You just get used to one routine / side effects and then it changes, I got myself so worked up thinking I was going to get all the side effects.
    The weekly chemo is really hard going as you don’t have much time to recover before you are there again so it’s totally understandable that you are feeling exhausted with it all mentally & physically. You are doing amazing though and the results you have had sound so positive!

    In the end I found EC a bit easier because it was 3 weekly. I found that certainly by the middle of the second week I was feeling okay and able to do some normal activities. I know everyone is different but I really hope that you find it the same. 

    From the beginning of the chemo I was really determined to try and minimise any side effects. Apologies if you know a lot of this already and sounds like you don’t have many side effects anyway but in case it helps this is what I did:

    religiously drink 2-3 litres of water a day, in particular on chemo days. 
    To avoid mouth sores brush teeth after every meal with biotene toothpaste and use Difflam mouthwash several times per day.

    To prevent nail problems I can highly recommend Polybalm.

    For dry skin, moogoo moisturiser & wash

    Loratadine antihistamine to help with aches from Filgrastim injections (I read this on here so thought it was worth a try and I only had mild aches)

    Dulcoease 3 times a day to prevent constipation 

    I asked for additional anti-sickness when I started the EC. I didn’t want to wait to see if I felt sick so I took them prophylacticIy. I asked my chemo nurse and she gave me all 3 types and I didn’t have any nausea at all.

    for menopause symptoms I mentioned them to my breast care nurse and they can offer solutions for some symptoms so if you haven’t spoken to them already it could be worth a try.

    Mentally we will always have good days and bad. It is such a rollercoaster isn’t it. I have tried to stop myself from thinking too far ahead. Each day I concentrate on that day only and not anything at all in the future. I have tried to do one nice thing for myself each day even if it’s just something simple like a walk in the sunshine. I also bought myself a little treat after each chemo. I know this isn’t always possible depending on people’s finances but I gave myself a budget of £15 to spend on something nice after each EC chemo to mark it as another milestone. 

    On really bad days I called my breast care nurse to talk through my anxieties and they were always really helpful. 

    If there is anything else I can do please message me. It’s so helpful to talk to people who understand isn’t it.