I met with Professor Jayson yesterday and went through results of my scan and thankfully the disease progression is slow. There are a couple of new spots but very small. We agreed 2nd line treatment is going to be the Carbo/Caleyx for 6 months. This actually suits me better particularly financially as it will only require travel to Manchester from Belfast once a month. Hoping and praying as we all do for good results.
I've had a really rough week emotionally. I lost a friend this month to this disease and another got the news whilst I was visiting her in hospital on Monday that she only has a short time to live. We have the same team at Christies. Absolutely devastated for the families. Both friends in their 40's. Heart breaking and also brought it home first hand as to how awful this disease is. I was to go to a charity event for cancer tonight and had to pull out. I really needed a night off from cancer ! I'm fortunate to have a good friend that lives nearby who understands as she is in same position. We met this week for lunch and a good natter. Thank you Ann for helping me stay sane !
Some of my family are shocked that it's back and it's been frustrating as I don't know if they've actually listened at all to me in the past year. Anyway enough of my yapping I just need to shake it off and back to being Mrs Happy and positive.
Any tips for this chemo combo appreciated.
Julie xo
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I'm really sorry to hear about your friends. I think the hardest thing about belonging to a cancer community is that we sometimes lose friends to the disease. When it happens twice in a short period, it can be very difficult to cope.
The upside is that we get to know people who understand totally. The scenario you mention where people don't seem to understand that Ovarian often recurs would be hard to deal with without the honesty and realisation of others in the same position. Without this site, I think I'd have felt isolated and alone. Having friends who are open has kept me grounded and helped me to accept a new normal.
I was wondering how long your oncologist has said to wait before starting treatment? Xx
I really could not have coped without friends that I've made that are in the same position and this site. I feel protected by it and relieved that whilst there is positivity we are all realistic. Invaluable support and the amazing thing is we don't feel like strangers. A safe place to be.
I have kidney tests this week and start treatment next week xo
So sorry to hear of your really tough week.
I think families often find it hard to take in as real what we tell them. (and in a way I can see why)
And yes, a big thank you to all those friends we have who try to stare it in the face with us.
Can't help with the chemo combo but hope you get on well with it.
And...... you don't have to be Ms Happy and Positive all the time.... you'd go pop! xxx
I don't know that combo yet - no doubt it will be one of my cocktails of the future!
So sorry to hear of your friends passing, it must be tough. I worry about my friends with the disease and the inevitable reflection that their hard times can/will be mine but yes, the reward is comradeship and understanding that cannot be found elsewhere.
I can relate to the family and friends being ostriche too., I've lost count of the number of times when I am being pragmatic and realistic that people reprimand me and say I must be positive! Very frustrating as I am determined and not downbeat.
Goodness me Julie, Belfast! I shall never grumble about the traffic on the M60 again on my (should be) 30 minute journey to the Christie.
Wishing you all the very best with your treatment. If you're ever at a loose end whilst in Manchester inbox me and I'll pop for a coffee.
Sandra I will be there monthly starting 8th Oct. I travelled weekly for 6 months last year. I think I was in autopilot ! How often do you go ? Would be lovely to meet sometime for a coffee.
It drives me crazy when people tell me to be positive if I'm being realistic. So many of my family have asked me will this chemo cure my cancer ...... They are in danger of getting a bang on the head 😃
so sorry to hear about your friends, you really have had a tough week, maybe do something nice and uplifting this weekend- look after yourself. I was at Christie's on Thursday and think I may have seen you as I was waiting- I picked up on the Irish accent!- if I see you again I will be sure to say hello! I have also a recurrence, and have just had second carbo/ caelyx, I have to say I was nauseous and tired for about 4-5 days after my first dose, so they have changed my anti-sickness meds and steriod dose, so fingers crossed. Other than that I have been very well and bounced back after the first week.
Not sure if you are interested in complementary approaches but I am taking supplements and Iscador with good results so far ( see separate post)
I am just in the process of being taken under the wing of Professor Jayson at The Christie. Jan are they aware that you take supplements such as Iscador and, if so, what is there response?
I spoke to Dr Clamp ( same clinic as Prof Jayson) he said he didn't have any objections if that's what I wanted to do, but he did say that if I am accepted on a trial for a parp inhibitor following this second line it may be a condition that I am not taking supplements. I believe prof Jayson has a similar view
good luck at the Christie- they are a great team xx
Thanks for your reply Jan. I had my first visit last Thursday and saw Prof.Jayson. I was aware of him through a Seminary held by Target Ovarian last year. He was very helpful and I felt really confident in him. I have ano. appointment in four weeks when he's had time to update all the info. that he needs. So will then probably be looking at some form of plan. Best wishes.
Yes I do feel confident in Prof.Jayson. I am low grade serous which is quite rare . I'm in for a CT scan this Saturday at 1.45 pm and then back for an appointment on 22nd October at 4pm. Julie I agree with you that we should have some form of identification, perhaps something like a scarf in teal !!!
Jan just reading your second post. I'm sure they said you can't be on any other treatments if you want on a trial. This is the same trial I'm hoping for xo
Please do say hello next time. I'm usually hanging around there all day. I'm there this Thursday for kidney function then back on 8th Oct to start my chemo.
I must look at the supplements. I did speak to Prof and he said no don't take anything. There is a trial coming up for parp inhibitor that I had heard you can't be taking any supplements. I must check with him next week. I did read good stuff about Iscador. How long of a break did you have after first chemo ? There are some mixed reports about this combo. Hoping Its straightforward.
yes you're right , if its the same trial with Olaparib it is a condition not to be taking supplements, but as the current carbo/caelyx is standard treatment Dr Clamp said he didn't object to them for now, but I would have to stop them if I am accepted on the trial. I've just had my second dose last Friday- I have found that days 4-7 seem to be the worst ( I'm day 5 now and still feeling a bit groggy- nausea and tired) but after the first dose I bounced back and was fine after a week, so I'm hoping this pattern continues. I'm not sure how much is down to Iscador and supplements but I am advised by the homeopathic GP and nutritionist that they will support my body to ensure the chemo is effective and reduce side effects, so far so good. I was pretty lucky and had over 2 and a half years remission- I really thought it wasn't coming back as I have been feeling so well but the bugger caught me unawares this summer!! I'm not back at christies until 22nd and 23rd October, but I will look out for you and Gwen if you are there,
I think I will ask him again if it's ok to take it. anything that can help is a bonus. I hope I get into a routine with side affects. I had my weekly routine and I coped well on carbo/taxol combo. Let me know if you have any other tips please. Hopefully see you soon. Good luck with the rest of your treatment xo
I too am very sorry about your friends, at any age it us cruel but 40's is beyond cruel.
I've just finished second line carbo/Caelyx. For me it wasn't too bad, I had the same type of side effects as carbo/taxol ie not a lot!
I would have my chemo on a Wednesday and would be fine till about Friday pm wheni would get a bit tired ( or was that because I was at work?) Saturday and Sunday were slow days and by Monday morning the fog would have lifted and I was back to normal. It followed that pattern until the last one the other week and it took me 4days to recover and I was sofa bound! But again bounced back. I didn't have sickness but did take my anti sickness anyway, the worst feeling was the constipation so changed the sickness for the last couple of cycles.
I was warned about dry cracked hands/feet and did start moisturising constantly but again that complaint didn't rear its head. Also warned about mouth ulcers, so had mouth washes and preventers ready to hand ( I went to my GP with a shopping list and he gave me it all). Also warned about itchy rash arms and chest.
Anyway I did take B6 and lots and lots of water. Managed to get through all the chemos without delays as bloods hung in there. For me it wasn't too bad and it's again a means to an end. I was told it was slower acting so didn't see the dramatic drop in CA125 or tumour size I did with carbo taxol, but it did shrink them.
I know we all react differently and I wish you all the best
I am new to Caelex on 2 me line around having had Carboplatin last year with no problems. Taking Laxido regularly but have serious constipation. Also using Cordasyl mouthwash regularly but still have mouth ulcers. Please can you tell me what was in your shopping basket.
It really is a cruel disease. I felt cheated because I was young at 39 but you hear of even younger people with young families and it is heartbreaking.
Thank you for all your info on the chemo. I think I will be organised and get the stuff and hopefully don't need it.
Hopefully my kidney function tests are good and I can get started next week. I just wish the first week was over. I found that so difficult last time xo
Hey I was there Thursday too. Didn't get out till 6.30 p.m. and by that time Professor Jayson was wrapping up clinic so didn't get to talk about much other than next course of treatment Cisplatin and Gemcitabine did think he said Topatecan which he denied but pretty sure I wouldn't have looked it up if he had not said so. Any Rotterdam not worked. Once stopped Cisplatin infusions the Etoposide did not work on its own and disease has progressed. Please keep your chin up ladies we are all in this ------ thing together aren't we, and it is so good we have found each other....
Hi Pat. I didn't leave clinic until about 4pm so no doubt we passed each other somewhere along the line.
If you're around on 8th Oct let me know and I will come say hello. Wishing you well for your next treatment. We are all in this together. It is so good to have support xo
Too true about this support network. Have a feeling I saw you in the coffee shop. Where you nearest table to entrance? If so, I have clocked you already. Don't think I will be there on 8th, but our paths may cross at some point.
Definitely Jan. Would be lovely to meet everyone xo
I just want to wish all of you the very best in your treatments, constipation is awful, I have suffered with it. Along with Movicol I was told to use Milpar which is now off the market and mix both, with hot water. Would Milk of Magnesia do same job with Movicol? I was told to eat a kiwi half and hour before food and friends recommended pears and prunes. One neighbour told me to stop fretting because in the law of gravity, it has to come out eventually and so the less tense I got, the more it helped. For mouth ulcers, the best thing was a spoon of salt in lukewarm water, it does work, Difflam is also good. I take milled flaxseed and I green juice almost every day. I am currently on Avastin for maintenance but feel that this treatment will stop as my two years are almost up, Sending you all best wishes
I have had a lot of issues with bowels also. Never a happy medium. I am either going or not. Not matter how I juggle the meds. Take Docusate and Laxido (Movicol). When I finished Etoposide I just kept going and going (like every lhr). Now not going, so back to old regimine.
I SHALL BE AT THE CHRISTIE TOMORROW AT 12.30 p.m. (Anyone else there?).
I will be there Pat. I've a kidney test so will be around. If you drop me a text to let me know where you are I will come to say hello. I really should update my profile pic as I've short hair now. My number is 07788547109
Hi all you fabulous ladies. Yes would like to meet face to face at The Christie. My appointment is 22nd October at 4 pm. I will try and find a teal scarf to identify myself.
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