So: Yesterday was my early morning train ride to London. A good friend came with me and let me lean on her to get to the platform.
I was feeling a LOT better, much stronger, but definitely not my old energetic self from 7 days ago.
We made it to the Royal Marsden via Taxi, but still had to wait hours for the bloods to be taken, so I finally got the gist of what goes wrong mornings at the Marsden.
You have to get there well before 9:30 am with no train connection disasters, which means we have to leave Bath before 7:00 am. That’s a drag, but it’s the only way that works. There is still too much time to kill between being seen in the clinic and infusion time, but no way around it and makes for a long day.
So, my lovely friend came with me when I talked to my sweet research nurse Anna. She was there to keep me from glossing over the hard time I was having on the trial.
Nurse Anna was as shocked and disappointed as I was that I was so hard hit by the meds. It seems that everyone else is tolerating the drugs really well!
There was no real way to distinguish between Taxol and TAK228 side effects, but since I had suffered similar debilitating side effects during first line, we decided to blame the TAXOL.
Nurse Anna conferred with a trial doctor and they decided to reduce the Taxol Dose to 75%.
I was happy with that, albeit a little fearful that it won’t be as effective, but if they are happy, I am happy.
I am also going to take paracetamol regularly ( every 6 hours ) to keep joint aches and headache controlled.
Nurse Anna was very sweet as usual and assured me that they didn’t want to destroy my quality of life on the trial and we would just have to see how the coming week works out.
After clinic, my friend and I went to a little Italian Cafe across the street and had a wonderful lunch. My Jazz singer friend Joan joined us and one friend went back to Bath and Joan stayed with me for the infusion, entertaining the nursing staff while I passed out.
I don’t Know why, but the Taxol knocks me out.
When I was finished, I felt great again, as one does when filled with steroids, and we killed some more time in another restaurant and could walk back to the tube station to get ourselves safely on our trains, so I was back in Bath by 8:30.
Feeling pretty all right.
This morning I still feel all right, so I washed my hair and did NOT feel exhausted afterwards and am about to take CYCLE 2 of the TAK228.
Here’s hoping the drugs work to kill our cancers and I feel loads better for the rest of the week.
Thanks for listening,
Laura
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Lindaura
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Well done Laura! It sounds like an exhausting day but also a very productive one. Its so good to have lovely friends around us, it makes a huge difference. Hope today you can just relax and take it easy. Take care sticky3006 xx
I have always been an amazingly sociable loner. Busy with my own projects and biz and life in the entertainment world, etc.
I never kept my friends very close, but they seem to have rallied round me anyway, which has made me very grateful and now I urge everyone in a crisis to turn to their friends - and family.
Most reasonable people, friend and family, actually want to help, want to be of service, want to be part of our lives and do whatever will help to make us better.
Sounds like a very tiring day , you packed a lot in. Glad it went well , sounds like you had a lovely time with friends too Enjoy a nice relaxing time today ! Lesley X
It is fun being in London and the Royal Marsden is in a great location.
It’s just a tiny hospital really. Spending all their resources in research, so you need to get out. If I had just a little more time and was feeling just a little bit better, all the most famous museums in Britain are right up the street!
No appetite today, but made myself eat my usual rice crispies for breakfast and Halumi cheese on toast for lunch with rice pudding for dessert. Sticking to white foods mainly.
Well that sounds yummy to me. It's lunchtime here and you just made me hungry. lol. Fortunately, I bring a feed bag filled with food so I can graze while I work.
Will you have dinner or just a snack?
Yes, this forum is always a comfort especially when we don't want to burden friends and family with any gritty details.
I have been thinking about you all week and didn't know whether to text you as sometimes when I am feeling rough then even replying to a text is too much. So pleased everything went ok in London and I admire you for getting through such a long day. Fingers crossed that the lower Taxol dose does the trick.
Right, I need to go and find my big girls pants ready for Thursday which seems to be my rubbish day of the week.
Mine is Tuesday, so it was Thursday that I started feeling awful. Lasted until Sunday night, so I wasn’t too bad on Monday, but weak as a dog when I started out on Tuesday.
I am hoping the lower dosage changes this, but I won’t Know until tomorrow.’
Can you tell me exactly how you feel? That may help me put this in perspective.
My infusion is Tuesday too. Wednesday I feel okay as I think I still have the affect of steroids in me. Thursdays I feel rotten - seriously lacking in energy, nauseous and basically want to hide under the duvet all day. Fridays I start feeling a bit better, Saturdays too when I actually fancy food and eat it. Sundays I feel totally normal again. Monday I start again on the steroids so feel magical - so much energy....and then it all starts again! Hope this helps xxx
That helps. So it’s not too different from how I felt last week. Just kept very bad until Monday, so maybe this reduction in dosage will lower the fatigue and breathlessness and I will perk up earlier. Hope this regimen is killing all your cancer!
More hugs from me,
Laura
So glad to hear you are feeling better, long may your health continue to improve x
So glad they have found a workable solution so that you can stay on the trial, Laura. Hoping the adjustment provides some relief from the nasty side effects and continues to fight back the beast. You are so open and generous in what and how you share your experience and in providing us with answers, advice and motivation and we appreciate you so very much. We are each, and collectively, rooting for your success. Though the process may not still be easy, we pray it will be worth it.
So glad things have gone better for you so far. Sounds like yesterday was such a long day for you, but good you were able to enjoy a couple of breaks outside of the Marsden
Glad they have a plan for you - I had my taxol on frontline reduced for third infusion as I was unable to walk for several days after infusion - my oncologist said they tend to go in at top end of the dose and adjust so I wasn’t too concerned by the reduction - fingers crossed this week is better for you x
I love reading your updates! Maybe one day you will write a book?
What a long day! Great that TWO friends were able to support & accompany you! London is exciting....maybe when you are feeling better, you can take in one of the Museums!
Hi Laura, hope all goes smoothly for you the rest of the week. It’s great that your friends helped make the long day bearable (and as pleasant as possible!) Thinking of you and wishing you great success! xx Gina
Sounds like you and your team are working on finding the right drug balance for you, Laura. My Taxol dosage was reduced to 80% as well after #3 of last year's Carb/Tax/Av Treatment line, which made me feel loads better, and why should it not work just as well for us , that way?
Keeping my fingers and toes crossed for your success, and improved quality of life during treatment. xx. Maus
So glad to know you’re on the trial but sorry you’ve been feeling a bit rough, hopefully once the drugs have settled in your system your body will tolerate them and you’ll find the remaining cycles manageable.
Taxol is a tough one I know but you’re a strong and positive lady and your positivity will see you through to the finish line! Sounds like you made most of your day in London and lovely to have special friends with you along the way 💕
Glad you are feeling better Laura, long may it continue. That Taxol is a beast, I had to have my dose reduced when I had it. My Oncologist says he is saving Taxol for further down the line again, as a big gun. Yay can’t wait! My tumour marker is now 177, and as of last week dreaded ascites is back. C T scan next week, then decide what treatment to proceed with. The bone pain I had on Taxol from day four for a couple of days each time was unbelievable. It is actually neuropathic pain, but it felt like my bones. Started in my shins, then as the treatments went on all over my body. Couldn’t stand to touch myself anywhere, so fully understand how you felt. My fingers are crossed for you with this trial. Much love Therese
So sorry to hear the beast had roared back so brutally. Ascites is awful and now you definitely need to do something quick - and strong!
Can you get into clinical trials there?
There must be a cancer research hospital offering trials.. it would be good to investigate that.
They say that women in trials do better...
Otherwise, I think weekly Taxol will be your next offering and if you don’t plan on living normally, but let yourself give into treatment and know this is just what you have to do now, it won’t be so bad.
I was just foolish in thinking I would not be affected so much and would continue to be normal through this treatment.
Thanks Laura, unfortunately no trials available, we have already looked into it. Also, over here we do not have the drug availability that you do in the UK. Even Avastin needs to be privately funded. They have just approved Olaparib for ovarian cancer, however only for Brca, which I am not. If it comes to it we will look at self funding further down the track. I have not thrown in the towel, and still have a number of options in the standard treatment line. Take care, Therese.
Do hope the reduction in the taxol dose is making a difference today. I found it hard to accept reduced doses in my current cisplatin/gem regime but my quality of life is so much better, it now seems worth it. All the very best. Jo 🌺🌼🌸🌻🌹
I started on the reduced dose as I’d had a pretty bad experience with caelyx which I began in April, lasted three months without a normal day and three separate weeks in hospital. I was pretty week by the end of it and was referred to the palliative care team. Started cisplatin/gem sooner than I wanted and ended up with another eight days in hospital while they sorted out my bloods with transfusion and electrolytes. So dose reduced some more and have been managing it much better since then with a week after third cycle when I felt ok to drive, pop to Sainsbury’s, meet friends for lunch etc. Mu mid term scan which will be nearer a end of treatment scans is on 15th with oncologist meeting due 7th November just before cycle 6. Fingers crossed reduced dose is working. x
The story of your treatment is very interesting. Just showing how difficult this battle is, as we are each so different. We hope our Oncologists can do the best for us, but we can’t realise just how difficult their job is.
Hope your treatment works and you continue to enjoy your friends and family.
As always you are an inspiration with your positivity Despite a very long draining day you are not complaining but expressing gratitude for your friends help and company. Hoping the weeks ok for you and sending love and hugs with fingers crossed
I'm so pleased for you Laura that you have ploughed through all that rough stuff and have and come out the other end feeling normal. I know you say it's not your best self but you are getting there
Will keep you in my prayers.
I'm getting ready to go to Ovacare patient day in Dublin. I don't feel too hot and hurricane Lorenzo is heading across the Atlantic towards us. If the forecasters are right I will be ahead of it!
I wish you all the best Laura and especially that you will be able to stay on the trial without severe side effects. Take care
Thank you for your lovely message. I have been reading your latest replies to other women and it's so good to read that your good feelings are still there. Your optimism is contagious and if we could bottle it we could all get rich. Long may it continue.
Hurricane Lorenzo stayed well behind me and I woke up to a calm morning with the leaves just gently fluttering. I was having a new bed delivered and looking forward to a comfortable night of unbroken sleep. The bed was duly delivered and I thought they had done everything too quickly until I discovered they hadn't assembled it. They would come back this evening to assemble it at extra charge ! Sparks flew out of my eyes and ears and then I pulled the out the cancer card which I use. It worked and I can look forward to my sleep tonight.
I'm now going to get a taxi to the shopping centre and beg a hairdresser to do something with my half inch spikey hair so that I will no longer resemble a retired Marine. I'm no Sinead O Connor but my wig is so uncomfortable now and has a life of its own. I need to look human for the Patient day tomorrow !
I will let people know how tomorrow goes. There's an interesting line up of guest speakers and I'm really looking forward to it.
Meanwhile Laura I hope you have a lovely weekend and that your good feelings continue.
Sometimes we actually deserve the extra care and support the “Cancer Card” affords us.
With all our secret sufferings, our fears and anxiety and the awkward humiliations we endure, associated with our various symptoms , we do deserve special treatment.
Wow Laura--I have been on two trials and dose reduction--even with bad side effects one one of them--was never discussed, so all I can say is good for you and how great they could reduce dosage. That you are still feeling good is a good sign and I guess the coming days between cycles is where you need to see that you have that quality of life that is so important during treatment. Appreciate the updates and look forward to more. (I am at Memorial Sloan Kettering and they have this thing called "chemo express" which is if you give blood the day prior (and they are OK) they chemo will be ready within an hour of your arrival the next day. It works most of the time....but many are not as close as I am to make the trip twice in two days. I have had those 8 hour waits---one is too many but I had many so I empathize. Maybe once in a blue moon, go enjoy the city with a friend the night before so you are there way before 9:30AM the next day. oxoxox Judy
I know what you mean. I live 5 minutes away from my excellent local hospital and I always drop over the day before infusion for the blood tests, so I am all ready to go on infusion day.
I thought about spending the night at a cousin’s home in North London, but decided that I would rather be home with my own little family.
So glad to hear this - this is what gives the rest of us, as well as obviously yourself, the will to carry on. This forum is great. Loved your post.
I am sure it was the Taxol - on my first line course with Taxol, I thought I was not going to make it (spent a lot of time in hospital feeling thoroughly rotten) and got only 5 instead of 6 cycles and on my last encounter with it, in fact they gave me a reduced amount.
I am still struggling to have some feedback from COC and still waiting for my oncologist to refer me to the Royal Marsden and Susana Benergee in particular, but on the positive point I am feeling great and hope that this new regime is, if not cure for me, it will give me some fairly good quality time and dare I say it - a holiday - thinking of the Scilly's - not to far from my local hospital (by helicopter)!!!!
You have to let me know the name of the Italian restaurant you ate at with your lovely friends, just in case I get to go and see Ms Benergee; as I think I have mentioned I spent 40 years of my life in Italy and I have an Italian husband.
Here's a big hug to you and all the people on this forum. Anne XXX
Laura you're amazing! How you found the energy and resilience to write and let us know so soon the answer to your problems after the exhausting ordeal in London, then to find even more to answer all the wonderful replies you received. Just where do you get all the inspiration from? I'm three days into my second infusion of carboplatin/caelyx and already feeling the strain. At the moment, nauseous, tiered, tingly and developed yet another UTI. However I'm not too bad and trying very hard to muster up enough energy to join my daughter, Penelope, tomorrow (October 4th) for her 40th birthday celebrations. I know from past experience the forth day is the beginning of 4 days of being housebound, no real appetite and worry. How you got through the last few days I'll never know.
That is so familiar! The first week after Carbon/Caelyx was always a write/off.
But getting my Taxol dose reduced seems to be working!
It’s Friday morning, and I am not sick! Not achy, not head-achy, just a little weird and not wanting to go dancing - or even shopping, but so different than last week.
I also have full blown diarrhoea, which I didn't’ have last week and which is not going away, even with 4 caps per day of loperamide
Anyway, I am loads better otherwise and plan to get more biz work completed today, which will relieve me of anxiety!
Actually Psyllium can used for both. Maybe others have tried it on here? Take care my dear, off to do another CT scan - not sure why - seems a bit early for any changes. Always a bit of an anxious moment. Take care. Anne XXX
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Enjoy a nice relaxing time today ! Lesley X 
