For those who may be interested, I started docetaxel chemo on 20th October and have just had my 3rd infusion on 8th December. I did moderate fasting the day before for the first infusion but haven't bothered since. I wore iced gloves and socks and munched on ice cubes during the chemo sessions. I've had no problems with hands, feet or mouth so far.
The most significant side effect I've had is severe fatigue throughout the whole 3 weeks after each session - so bad that I can only walk a few yards without sitting down again and resting while my heartbeat feels like I've just run around the block! I did lose a bit of hair on my head but that seems to have stopped now and I still have my eyebrows, lashes and facial hair. My appetite has also reduced and I've lost 10 Kgs since I started the chemo. I try to do some resistance training a few days a week but it's so hard when you feel as weak as I do. Consequently, my upper body muscle mass has definitely reduced which probably explains some of the weight loss.
Due to the severe fatigue, my 3rd infusion was delayed by a week and the dose reduced to 85%. That was just 2 days ago but I already feel like my appetite is better and maybe am just slightly less fatigued but still can't do much without collapsing in a heap for a rest.
I will have a CT scan on 22nd December to see how effective the chemo has been with reducing my mets so far, so I'm hoping for good news! The NHS don't have much to offer treatment-wise after this - just cabazitaxel and that's it so I'll be self-funding anything after that.
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Benkaymel
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You need to get protein in your diet. More than normal. I can always eat a McDonald's cheeseburger. That and a meal shake should be sufficient. Once you're finished with the treatments, you can add in the healthy eating.BTW, I'm a sushi guy I'll send the wife out to get me a couple Ahi Tuna and Fatty Salmon. Love it.!!!
Very tasty pure homemade beefburger with cheese and tomato! We had a side salad to make an effort at some healthiness and finished off with a couple of mince pies 🙂
I was only 60 years old and I didn't feel anything like you. After 4 or 5 cycles I started to feel my feet and hands a little bit strange. I was diagnosed with grade one neuropathy.
My biggest problem was psychological in nature as the people working on me sometime were perfect and sometimes made mistakes like flushing trough the residual docetaxel (7ml) trough my veins with high speed in the end.
Otherwise I was ok. I was better than now. I just started ADT and I didn't have any idea what is ADT. Now after 5.5 years I feel the effect of the long term ADT. I had an early chemotherapy.
I was recommended by my MO the following clinical trial with Nubeqa plus new PARP inhibitor from Astra zeneca. The toxicity should be less than from the old PARP inhibitors as this new one effects only the cancer.classic.clinicaltrials.gov/...
You probably don't fullfill the inclusion criteria for this trial, but check it for yourself.
Thanks for the info on the trial - it looks very promising and from what I can see, I think I would be eligible for it. The only problem is that the 4 UK venues recruiting are all quite a hike from where I live but it could be worth the commute.
Thanks, I have asked if the NHS will fund a liquid biopsy for me and been told no. I've looked into Guardant360 and it would cost about £1500 so I am considering that.
TARGET National: A U.K.-wide liquid-based molecular profiling program to enhance recruitment to early-phase trials.
Ok, this is maybe not a Guardant 360 liquid biopsy, but some British effort to test 6000 people and to place them into some phase I clinical trial. You can read my above link again. Maybe it was misleading to say that it is a liquid biopsy, but it is not far from it.
Here are a locations and they are recruiting:
Brief Summary
The primary aim of TARGET National is to establish a national framework to offer molecular profiling of circulating tumour DNA and/or tumour tissue (optional) to patients with advanced solid cancers referred to any of the Experimental Cancer Medicine Centres (ECMCs) across the UK, in order to help decision making for allocation to molecularly targeted experimental cancer treatments. Patients will be allocated treatment using a national Molecular Tumour Board to find the most suited therapies based on their molecular profiling results.
This study aims to recruit up to 6,000 patients with advanced solid tumours across 5 years and proposes to collect blood samples, archival tumour tissue and fresh tissue (optional)
The data may also be used for future development of predictive cancer biological markers, the design of clinical trials involving new or existing drugs, discovery of new genetic targets and exploring how resistance to specific anticancer agents arises in patients to help improve future cancer treatment management.
Show more
Official Title
Tumour Characterisation to Guide Experimental Targeted Therapy - National
Conditions
Cancer
Intervention / Treatment
Other Study ID Numbers
CFTSp191
Study Start (Actual)
2021-06-30
Primary Completion (Estimated)
2026-01-30
Study Completion (Estimated)
2028-01-30
Enrollment (Estimated)
6000
Study Type
Observational
Resource links provided by the National Library of Medicine
Contacts and Locations
This section provides the contact details for those conducting the study, and information on where this study is being conducted.
Study Contact
Name: Matthew Krebs
Phone Number:
01619187672
Email: the-christie.target.national@nhs.net
United Kingdom
Belfast, United Kingdom, BT7 1NN
RecruitingQueen's University Belfast
Contact:
Vicky Coyle
Birmingham, United Kingdom, B15 2TH
RecruitingUniversity Hospitals Birmingham NHS Foundation Trust
Contact:
Mark Openshaw
Cambridge, United Kingdom, CB20QQ
RecruitingCambridge University Hospitals NHS Foundation Trust
Contact:
Bristi Basu
Cardiff, United Kingdom, CF142TL
RecruitingCardiff University and Velindre Cancer Centre
Contact:
Robert Jones
Edinburgh, United Kingdom, EH2 2SP
RecruitingWestern General Hospital Edinburgh Cancer Centre
Contact:
Stefan Symeonides
Glasgow, United Kingdom, G12 0YN
RecruitingBeatson West of Scotland Cancer Centre
Contact:
Patricia Roxburgh
Leeds, United Kingdom, LS97TF
RecruitingSt.James's University Hospital
Contact:
Fiona Collinson
Leicester, United Kingdom, LE27LX
RecruitingLeicester Cancer Research Centre
Contact:
Olubukola Ayodele
London Borough of Sutton, United Kingdom, SM2 5NG
Not yet recruitingICR & The Royal Marsden
Contact:
Anna Minchom
London, United Kingdom, NW3 2QG
RecruitingRoyal Free Hospital
Contact:
Robert Goldstein
London, United Kingdom, SE1 9RT
RecruitingKings Health Partners
Contact:
James Spicer
London, United Kingdom, W120NN
Not yet recruitingImperial College London
Contact:
Nicola Valeri
London, United Kingdom, WC1E6BT
RecruitingUCL Cancer Institute
Contact:
Martin Forster
Manchester, United Kingdom, M20 4BX
RecruitingThe Christie NHS Foundation Trust
Contact:
Matthew Krebs
matthew.krebs@nhs.net
Newcastle, United Kingdom, NE7 7DN
RecruitingThe Newcastle Upon Tyne NHS Foundation Trust
Contact:
Alastair Greystoke
Oxford, United Kingdom, OX3 7DQ
RecruitingOxford University Hospitals NHS Foundation Trust
Contact:
Eileen Parkes
Preston, United Kingdom, PR2 9HT
RecruitingRoyal Preston Hospital
Contact:
Ruth Board
Sheffield, United Kingdom, S5 7AU
RecruitingSheffield University Hospitals NHS Foundation Trust
Contact:
Robin Young
Southampton, United Kingdom, SO16 6YD
RecruitingUniversity Hospitals Southampton NHS Foundation Trust
Contact:
Ellen Copson
Wirral, United Kingdom, CH63 4JY
RecruitingThe Clatterbridge Cancer Centre NHS Foundation Trust
Tumour Characterisation to Guide Experimental Targeted Therapy - NationalClinicalTrials.gov ID NCT04723316
Here is the link so you can see it for yourself what I paste you above.: 6000 people will be tested and placed into phase I clinical trials. They are recruiting. I understand that it is sometimes very difficult to communicate with health care provider. Even my professor of oncology doesn't know everything. Now you have it black and white written down.
Thanks Seasid, I had actually already read that from your previous post and it could apply to me. My nearest centre is the Royal Marsden in Sutton which is not yet recruiting but I'll certainly keep an eye on it.
Would you like to move to Australia? You could get the clinical trial and I believe that the Lutetium PSMA treatment is only 6000 A$ in my local hospital in Sydney Darlinghurst at least that is what was offered to someone here in Australia by professor Emmett. Plus they are recruiting for a clinical trial with Actinium. I am not sure in all of this but you could contact either my Darlinghurst NSW Australia hospital or even better our best cancer Centre in Australia Peter Mac Callum cancer Centre in Melbourne, Victoria, Australia.
If you are a British citizen you could get a reciprocal Medicare card while you are spending time in Australia. I am not sure for how long as it may changed but when it expires you can just visit New Zealand and come back to Australia again. It is good to know about this, but I am not an expert and things can always change.
I too had severe neuropathy after chemo, and it has continued for two years. It may sound dumb but I have found an earthing/grounding pad to truly help elevate the neuropathy, and help with sleep. What are the long term ADT effects you are experiencing?
The ADT effects are getting worst I don't feel normal anymore. I don't feel well but still I am happy to be alive. During the first two years of my ADT I was reasonable ok. I always thought that the COVID restrictions made things worst for me, but I may be wrong. I am very happy that I am still reasonable fine after 5.5 years on ADT. I am not complaining too much.
Glad you are doing pretty well with your docetaxal journey. For me, after 10 infusions, I wish we had stopped at 8 due to increasing neuropathy in feet and fingers and all the other side effects. . I saw continued decrease in PSA for about 6 months followed by rapid rise. I had been following research on Lu-177 but it was not available in the US at the time so began looking overseas, as I am in the US. I connected Dr Amy Eccles at the London Clinic and received my first treatment there. She and her team were excellent. I’ve since received 3 more infusions of Pluvicto (Novartis name for Lu-177) at Duke University Medical Center. My PSA has dropped to .05 (from about 9 prior to starting Lu-177) and scans show tumors have disappeared or are barely seen. Side effects have been minimal, especially compared to the remarkable fatigue, hair loss, and neuropathy with docetaxal. Eat whatever tastes good. I found meat and potato type meals best along with some green veggies. Best of luck with your continued treatments.
Keep the Faith, tough it out, if it's working then it's worth it!
All the side effects Chemo can bring totally suck! The fatigue especially! For some, it does abate post therapy. I would say it took well over a year for my body to start to feel normal. Still have constant fatigue due to all the ADT drugs and such, but I will say I feel almost normal, lol, the new normal of course. Chemo wrecks the body, is extremely toxic and does some crazy stuff. My skin has never returned to normal color and without some sun, I look grey shaded. Might be aligned to being anemic from Lynparza, but was that way before from chemo. If experiencing neuropathy, that too can be mitigated, for some of us, it just takes some work. Bottom line is, we put all this stuff into our value systems and come up with the acknowledgement that it is better to deal with these things and abate the cancer, if even for a time!
If you start feeling peripheral neuropathy you should stop immediately. That is the advice from Dr Fred Saad. You should not poison yourself if it is not working. Nowadays I believe we can live long if we can stay with good bone marrow, healthy liver etc. Cabazitaxel cause less peripheral neuropathy but it is more toxic to the bone marrow. I would prefers for myself Jevtana (cabazitaxel) as it is crossing the blood brain barrier and could fight cancer in my brain. I have distant Mets in my neck (not visible now).
I was just wondering why didn't you have early chemotherapy?
The NHS didn't offer triplet therapy - only doublet of ADT plus Xtandi which I was happy with at the time as my research suggested it should last at least a couple of years. Turns out I was wrong.
'So, in the abiraterone and enzalutamide era, is there still a role for upfront chemotherapy in the mCRPC setting? I would definitely say yes. Robust data support upfront chemotherapy in patients with mCRPC who have a clear disconnect between PSA and burden of disease. Tumors in patients who have a low PSA but a high burden of mPC clearly lack an androgen receptor therefore pose a much higher risk of treatment failure on hormonal therapy. Additional considerations for upfront chemotherapy include high burden of visceral metastases, rapidly progressive moderate to severe symptoms, minimal response to primary AD, or androgen receptor splice variant-7 (AR-V7) in circulating tumor cells, which predicts worse outcomes in mCRPC.26 Together, these groups comprise about 10% to 20% of patients who walk through our doors."
Could you consider changing oncologist? I am not saying that you should but it is always an option, or maybe like Brysonal, have two of them. Finland looks like a good option. It is not too far from you. Or just join a suitable clinical trial. I am struggling with this types of sessions myself but until now I was lucky.
You could even move to Australia but I am not sure if it would be better for you? I personally believe that the British NHS is very comprehensive. You even have Xofigo paid. Here in Australia Xofigo would cost you 60000 Australian dollars. In my hospital you could maybe arrange Lutetium 177 PSMA treatment for 6000 Australian dollars per infusion. At least that is what I was told by someone from our health unlocked forum. We have a reciprocal Medicare arrangements with Britain. Maybe that could also help. If you find a clinical trial here maybe you could stay here in Australia. I don't really know but you could try to find out. Our best cancer hospital is Peter Mac Cancer Centre is in Melbourne, Victoria.
I agree. Maybe you should just get a second opinion in order to feel better about what you are doing. At this moment I would be happier to have a second opinion from an RO, but it is not urgently necessary as I hope that I will be doing fine on my current treatment.
I like to think through my next steps before I need them.
The toughest part of chemo is always fatigue. Fortunately docetaxel is one of the milder ones, even though I know it doesn’t feel that way.
Try to walk and do your resistance exercises anyway, even if seems that you’re too tired. The hole of advanced sarcopenia is extremely tough to crawl out of when older.
It’s never too obvious to say that any amount of exercise at all is vastly better than nothing.
You inspired me to get on my home multi gym and static bike for a session this afternoon and I feel so much better having made the effort. The wife made me a cheeseburger after as well! 🍔 😋
Static bike doesn't count as a weight bearing exercise. I would suggest running, but that could be risky. I am doing that from time to time in Australia.
Thanks for the report. I haven't done chemo yet, but how complicated was it to do all the icing of hand, feet, tongue? Did you run into resistance from the facility? I assume you got minimal assistance from them.
Sounds like quite an ordeal on the energy front. I hope your results are great!
I had no assistance at all from the hospital. I bought the mittens and socks on Amazon and took the ice cubes to munch from home. I was surprised to see no one else doing the icing though.
I had the 6th infusion on Nov 8. I was never informed about fasting or icing. I was actually encouraged to snack during the one hour drip.
For the first three cycles I was able to bike ride several 10 mi rides. After 4, no energy to ride. And ADT was killing my muscles. Then epiphora and neuropathy both hit and got worse after #5. Number 6 was the worst cycle, but other than total fatigue, SEs didn’t get worse. Slept almost round the clock for 10 days.
I have tried ice baths for hands and feet but that didn’t help. The oncology nurse said that both should go away in several weeks to a couple months. Too soon to know.
I learned about icing from this forum - no help at all from the NHS. I hope your epiphora and neuropathy do indeed go away soon. Interesting that cycle 6 was so much worse - I'll see what happens with me!
Hi. Thanks for posting such an informative progress report, was wondering how you were getting on. You’re taking all the right precautions. Can only suggest attempting physical activity to counter the fatigue. Good luck with the scan. Stay positive.
Thanks Ian, I am forcing myself to do a workout on my home multi gym most days and it certainly does help the fatigue. Also, they reduced the chemo dose by 15% which I think has helped a bit. I will post results of the scan.
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