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Re: Trodelvy - any info to share?
Hi @Jgameau and @lisa1407 Jgameau, Just saw your message and think it is wonderful that you were able to travel for 7 months. -though not so good to come back and face more chemo. I am still on Trodelvy - 31st dose - and I'm sorry to say the side effects are still myriad and constant and seem to change all the time. I think my wheels( exhausted body) might be starting to fall off. For the last month I have had a lot of backpain so am taking morphine and other painkillers. Still very tired all the time also. My husband forces me out for a walk most days and even though I wake feeling awful, the walk helps clear the fog and the pain. I am still on 50% dose. My hair has grown back a bit but very strangely- last regrowth prior to Trodelvy was a sort of a loose afro. Now it is very short, dead straight and thin boyish look - a la David Bowie.It is really good to have SOME hair, though no eyebrows still. I hope you are managing. Please let me know. Send hugs xxRe: Trodelvy - any info to share?
HI Lisa1407 Re hair - I look like a convict which is hard as I used to have really nice thick blonde hair which I took for granted. I am getting used to it by now but it is a severe look. It is cold in this weather without hair so I always wear a beanie. Maybe you should just keep it covered and let it grow a bit ? I hope you are not as exhausted as me. I think I may have a covid hangover - my Oncologist gave me a couple of weeks off a month ago and I immediately caught covid from my daughter who brought it home on the last day of school term 2. I had anti virals but have really gone backwards since then in terms of fatigue. Thanks for your message. XX126Views0likes0CommentsRe: Trodelvy - any info to share?
Hi Lisa1407 Thanks so much for your reply. My Oncologist was expecting me to have terrible diarrhoea too but instead I have had terrible constipation for which I take coloxil senna each night. All my hair fell out at the beginning after only two treatments but strangely now is starting to grow back a bit - perhaps due to the lower dose. I am also being treated at a big Melbourne hospital and my oncologist now has quite a few Trodelvy patients - she says that she has had to reduce everyone's dose because people just can't get out of bed. I have a friend on chemo who has used medicinal cannabis very successfully but to counter anxiety not gastric problems. 12 kilos is a lot to lose. I lost about 8ks last year on my first lot of chemo because it made me throw up so much but Trodelvy has not done that and I have regained that weight. It sounds like you will need another reduction. The trials showed that the reduced dose still works. Do stay in touch and hope you can get the side effects under control. Best wishes xxRe: Trodelvy - any info to share?
Hello @Lisa1407, @wendy55 and other Trodelvy patients. I have triple neg mets and have just had my 19th treatment of Trodelvy after starting in February this year. I was quickly reduced to a 50% dose as it was knocking me out completely. I am still fatigued most of the time but I am functional and think the exhaustion was made worse by a Covid hangover from three weeks ago despite having got straight on to anti virals. Anyway, so far it has reduced the size of my chest, brain and bone tumours and I'm keeping my fingers crossed that my next scans due soon will be positive. If anyone has had more treatments than this please let me know. I feel like a bit of a guinea pig as the drug has not been in Australia for long and only on the PBS this year. I don't know where I am going. At least it has worked so far, unlike the other drugs I was on last year. Love to hear back from anyone....Re: Trodelvy - any info to share?
Hi Everyone Thanks for your great news jgameau, I too have had good news about Trodelvy. After 8 treatments, my scans showed that my lung mets have shrunk and most of my brain mets are gone. It is not clear about my bones but I am very happy to know that the Cancer has not progressed. Also, I feel bit better because my oncologist reduced my dose by 25 % two weeks ago to try to ease my exhaustion and this has worked. Still tired but have a bit of energy.Re: Trodelvy - any info to share?
Hi All I have had 5 doses ( 2 weeks on, one week off) of Trodelvy. The side effects seem to keep changing for me. The fatigue is always there but over the last week I have also had dizziness and insomnia is an ongoing problem. The week before that I suddenly got a rash over my lower legs and feet - very itchy - Initially I thought I had been attacked by mosquitos but the tiny red spots were very small and definitely a side effect. I have a constantly dry mouth and my hair fell out within two treatments.I never know how it will be so I try not to plan anything and have given up work because I feel wiped out most of the time. I started Trodelvy after a year of trying three other types of chemo - none of which worked. I think it is a prerequisite to have tried other drugs before you can access It. My oncologist calls it a 'game changer' for triple negative met patients. I had to pay for the first two doses and then the drug company decided they would pay the rest. A huge relief as it is very expensive. I try to stay positive though it's hard when you feel so wrecked. I have scans in a few weeks which will determine my fate. Thankyou very much to Arpie for posting that excellent article from the Sunday telegraph which gives me hope. Best wishes to you allRe: New member - Question re oral chemotherapy capecitabine
Hello Ellamary I was on the capecitabane tablets for only about 4 months. They were not strong enough to stop my cancer from spreading so i am back on infused chemo -eribrulin. Before i was on the cap tablets i was on carboplatin for 6 months which had awful side effects for me. However, i found that there were no additional side effects with the oral chemo. The usual exhaustion persisted but it was much more tolerable than the infused chemo. You have to just get used to taking a lot of pills! Also it was great not having to go to hospital every week for chemo. Please stay in touch and let me know how you go. By the way what chemo are you currently on ? Best wishes to you xx
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