Hello ladies. I have had my third infusion of Carboplatin today. After the chemo finished my hand became very painful. I think this happened once before. I didn’t tell the chemo nurse as I thought it would go away. However it’s now going up for midnight and my hand is still very painful to touch. I’m worried the chemo may have leaked outside the vein. Has anyone had a similar experience.
I haven’t asked about my CA 125 for 2 months as I’m a coward. This is my 4th recurrence in 3 years. I have been warned there aren’t many options left. CT scan pending. I’ll let you all know how I get on. Did anyone read about the vaccine mDNR in the Mail on Sunday. It’s used to treat Covid 19 and is on trial for treating advanced cancer. Two patients on trial were named and had a really successful out come. Ovarian cancer wasn’t mentioned but I got the impression it could be used instead if chemotherapy during the next 2 years. I googled it and found more about it. I was excited at the prospect like we all are when new drugs are announced. I will ask my oncologist about it when I speak to him in 4 weeks. If any of you have an appointment with your oncologist sooner you may wish to mention it to him or her and let’s us know. Time is of the essence.
Love to all from Angela xx
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Angela don’t you have a number you can ring at any time of day or night? Im sure I was given one on a little card when I started chemo. I think you should ask someone about your hand if it’s really painful. Is it discoloured or swollen or hot to touch?
My hand isn’t discoloured-yet but I think I’ve had this pain before. That time The chemo nurse said it would discolour later. I’ll ring someone tomorrow as the pain seems to have crept up my arm a little. Thank you for replying.!you’re up very late like me. Pleasant dreams
Thanks for the very interesting info on the new treatment. Not sure about the vein but I had a thrombophlebitis- infection in vein I think and had to have ultrasound. It got better but vein no good for access since. Have you considered a portacath?
Hi Neona, yes. They tried to fit a port in my chest without success. My onc isn’t keen on a port as he feels they cause infections. Today was the first vein the nurse tried. All the flushes and chemo went through I’m just hoping it went through to the right places. Love Angela x
If ports are installed properly and flushed properly they are far safer than picc lines or cannula. They are the standard of care in some countries. I've had a port for over 6 years and never had a single problem with it.
That’s really good to hear. I’m still waiting for results of my CT scan over a week ago. I’m hoping I will get more treatment. Then I’m going to have to do something about having a port or something to help me with cannulating. Thank you for thinking of me. Love Angela x
Hi Delia, no I haven’t looked at trials yet but I have mentioned them to my oncologist who says we are throwing ourselves to the wolves in trials. However I believe someone has to , especially when all else fails. I can’t have a port. I will phone the CSN tomorrow is Fb the pain hasn’t gone. Love from Angela x
Good luck with arm I have a port now which seems to be okay if a bit sore. I’m being reviewed today after 9 taxol treatments so nervous about outcome, interesting your research on new treatment. You always are very positive so hoping you get outcome best wishes x
Thank you Permafrost. I put on a good front. I die in side at some point like we all do. The Taxol did work originally so even if it stops working it must have done some good earlier treatment. All the best
Hi Angela. I hpe yr hand is feeling better. If you are interested in trials you may need to swop oncs as it sounds like yr onc doesnt believe in them. Ive been on 3 and believe if I hadnt I wudnt be here now. I hope you can find something. Big hug, Kathy x
Hi Kathy, I’ve only just seen your message. Good to hear from you. I’ve listened to your every word for the last 3 years. I’m scared of the prospect of no more chemo I have to admit and dread the pending CT scan. I hope you don’t mind me asking but did you ever have mets in the liver or know of anyone who pulled through it? Love Angela x
Wow! Where and when was this Telsa. The US I gather. I’ve been in a lot of pain these last few days and desperate for any information out there. Thank you for replying
Hi Angela, how's the hand today? Thanks for the info. about the vaccine. I've just been reading about it and it looks promising. When I had a second opinion at The Marsden Dr B said there are several trials currently for platinum resistant women which are listed on the Clinical Trials website. My local hospital, although good, wouldn't refer me I don't think if I didn't ask. I'd definitely be game for a trial as so many women say the level of care and monitoring is always excellent and all future treatment is based on trial results with new drugs. Go for it! x
Hello again Sticky. I’m at a stage when I’ll try anything. I’m older than the majority of the ladies on here and feel I have a kind of motherly responsibility to care for the many younger ladies. I live about 30 miles as the crow flies from The Christie so don’t rule that out. My CSN mentioned Dr Jayson. I think he’s an oncologist of well renown and respect. My own hospital in Sheffield have a clinical trials dept. but they don’t have anything ongoing for OVC (typical)
Love from Angela x
If all else fails it could mean a trip to London. X
I too had this on one occasion after my chemo Taxol/Carbo but it went after the first day, so hopefully the same will happen to you. And like you l never mentioned it at the time. I was ok the following, l never wanted them to stop my chemo sessions so when they asked me if l was ok l always said yes even if l wasn't silly really but lm sure you'll understand my mindset at the time. Interesting this trial you mentioned in the daily Mail l am going to look it up. I hope and pray for you that this treatment works .
And it is exciting if there's something out there that helps us. Do you take Turmeric Angela l have it in my food daily or take it in a supplement lm sure its helps me, l know were all different but l will take whatever it needs keep me going . Stay positive and keep well.
Hi Sheila, thanks for the hand info. Like you I always say I’ve been fine. I once said I’d been having pain in my (fat) leg with lymphedema. She immediately fetched the sister who was so concerned she patched me up, rang the oncologist and sent me home so I’ve learned my lesson. 🙄I bought 6 boxes of Tumeric when it was two for one at Holland & Barrett. When I read the info about Tumeric I couldn’t take it as I’m on blood thinners. Couldn’t even pass it onto my husband as he does too. Fortunately H&B gave me a refund on the unopened ones. I was disappointed as the chemist, who is Indian, assured me it was the best natural medication on the planet. He even has it on his cornflakes.😀
I’ve just found out, that for the same reason I can’t take CBD oil/capsules or I’d have given that a try. I’ve just bought Milk Thistle for tummy upsets. The capsules are huge. I must pluck up courage a start them.
Angela, think were all as bad as each other on that one aren't we what a shame about Turmeric. But if you have underlying problems its best to be safe l also take CBD capsules. The ones l normally get in Tenerife l feel are much better quality, but because of lockdown haven't been able to get back there. So got mine from Amazon but prefer the others in the hope there actually doing something. I have most of my Turmeric mixed in my food soup every other day but capsules for the days l dont have it in my food. Incidentally the capsules are huge but needs must. We just do what keeps us going hopefully.Good luck with the milk thistle hope it does you good. Good of H & B to take them back. Just keep doing what your doing you seem an extremely positive person, which you have to be. SheilaFxxx
Hi Sheila, I saw a great programme on TV. I think the presenter was Dr Raj Singh. It was about CBD full strength including the TCH (not sure that’s the correct abbreviation) it showed elderly ladies in Greece, all with cancer, sitting on a wall smoking like chimneys and having a whale of a time and hopefully warding off the cancer. I’ve tried to Google the programme since without success. Might try YouTube.Love Angela x
Thanks Angela, the more information we can get between us the better too be honest. And if it keeps me well lm willing too try most things. Take care, l think summers on it’s way yippee. SheilaFxxx
I HOPE YOU GET GREAT RESULTS FROM YOUR SCAN. 2 THINGS... THE PORT , FOR ME, HAS BEEN A BLESSING. NO INFECTIONS, NO PROBLEMS WITH ACCESS. I ALSO USE IT FOR ALL MY BLOOD WORK. EVEN FOR HOSPITAL STAYS IT MAKES IT EASIER WHEN YOU DON'T HAVE YOUR ARM OR HAND DRAGGING THE REST OF IT ALONG.
I READ ONE OF YOUR POSTS AND YOU SAID YOU CAN'T TAKE TUMERIC OR CBD BECAUSE YOU ARE ON BLOOD THINNERS. I AM TOO AND WAS THINKING ABOUT BOTH. CAN YOU PLEASE LET ME KNOW WHY WE CAN'T USE THEM. I HAVEN'T HEARD THAT BEFORE. THESE BLOOD THINNERS ARE A PAIN!! GET BRUISING ALL THE TIME AND THEY STAIN MY SKIN. YUK!
Hi Lee, I googled it and then phoned Holland and Barrett. Google said it wasn’t advisable as Tumeric and CBD were both blood thinners. Holland and Barrett said the same. However my chemist, who is Indian, didn’t agree and said Tumeric was the best thing since sliced bread and he has Tumeric with everything. Including his cornflakes I assume. The oncologist said he had no proof CBD was either a help or a hinderance and couldn’t always rely on what it says on the tin. I haven’t asked him about Tumeric. Good luck Lee
I had the same thing when my drip 'tissued'. Only a small amount of the chemo went into the tissue but it was painful and I think it lasted a day or two.
I hadn't heard anything about that treatment so I'll get on Google.
Thank you Liz, still keep my eye open for you at WP. I go Tuesdays now monthly. The pain in my hand has eased today so not quite so worried. CT scan pending so fingers crossed 🤞 Love
I look out for you too!...but no wonder our paths haven't crossed yet. I'm going every 8 wks for bloods before a telephone appointment and it tends to be a Monday. Thats flexible tho so hopefully we may well bump into each other. Everything crossed here for your next scan.Liz.x
I hope the pain in your hand has improved today. This is just to support what the other members have said - please do call your chemo hotline to get advice on this.
Thank you Anna. I rarely think about the hotline as I feel they’re so busy. I did once about constipation( hate that word) they gave me excellent advice and rang for 2/3 days to make sure I was ok. You’ve just reminded me of how helpful the are.The pain in my had has eased today, however so not so worried. I will mention it when I go for further chemo. It’s bruising a little of course , which I expected.
Hello again Laz I’m ok now. Had a few weeks of not feeling too well on the Carboplatin but I feel fine today after yesterday’s infusion. It usually kicks in Thursday or Friday, then the trouble starts. I’m worried about the liver lesions more than anything. My mum died of liver secondaries 35 years ago and was never offered any treatment so naturally I’m still feeling guilty I didn’t push it for her but quite frankly I’d never even heard of chemotherapy then. I’d never heard of OVC 3 years ago when I was first diagnosed. I was going to the GP from Jan to May with sickness, bloating etc before any treatment started. I’m going on a bit now, sorry.
The pain in my hand, from the cannula, has eased today so that’s one less worry.
Well I’m glad hand has settled for you. Did you get anywhere planning your wee cruise? How many more carboplatins are you having?I hope it is working. I am waiting MRI and appt with surgeon then second opinion prof C. Small bits of disease but in difficult places, apparently. Trying to keep busy to keep it out of my thouggts every minute, like we all experience I guess.
We still have the cruise booked and have 3 weeks to decide. We managed to get insurance without cancer cover which the oncologist approved of. The only problem now is our tiny lockdown puppy. She’s a Maltipoo. We have a few offers from friends who love her but won’t let her sleep on their bed. She doesn’t she’d hair so we don’t mind of course. She hasn’t been very well for a few weeks and the vet hasn’t found the food which suits her yet. We’re keeping our fingers crossed about both. She’s too young and cute to leave with a professional dog sitter. She’s my daughters puppy but they are going on the cruise with us. I think it’s a 70% chance we’re going up to now. The cruise goes 15th July. 🤞All the best with Prof C. You can’t go wrong there.
Hello again Laz, so glad your puppy is over her tummy troubles. Could you please let me know what diet you changed to. At the moment Jasmine is having just chicken and bounded rice , which the vet suggested but she is still being sick in the night sometimes. Like last night. She doesn’t have any treats at all at the moment but still not getting there. Nothing to do with OVC I know but it’s worrying is all so much. All her blood tests are fine. Vet can’t find anything wrong. She’s 8 months old. Love from Angela xx
Oh poor pup. I went to two different vets who gave different advice from breeder, spent a fortune on some posh gastrointestinal products, which did nothing. Eventually got some decent kibble from my local petshop, some high quality locally made product with no additives or rubbish in. He was also being sick aswell. Its a worry. I am no expert but if still unwell even on chicken and rice thats not good, unless he is allergic/ intolerant to this? I need to pm you probably but dont know how to do that. 🙄
I can’t help you there except you’ll probably have to follow me. I follow you. I’ll try to find out about PM. Thanks for your reply. It’s kind of you Angela xx
Hi Angela, just hoping that your hand and arm feel better today. I live in the U.S. and I’m also a night owl. I feel like I am one of the older ladies on here too, will be 75 in November. I was diagnosed at age 72 and stage 4. It sure has been a journey that isn’t easy. Take care , sending a big hug. Donna xx
I win 😀I’m 77 diagnosed at 74 can’t wait to be 78 in December. I’ll feel it’s such an achievement. I used to dread birthdays but boy how I’ve changed. Love Angela x
Mine is December 5th Jill. I assume that’s why I was called Angela. 3 weeks before Christmas means the trimmings go up early and I still get birthday and Christmas presents 🎁 Angela x
Hi Angela, yup you win! Good for you that you are still fighting this dreaded disease. I am with you about having another birthday. Another birthday is a wonderful blessing that we can be with our loved ones. 💕 Take care and I’ll be thinking of you, Donna U.S. xx
Thank you . I’ll be thinking of you too.Especially when my little family who’ve booked to go to Disney Florida in October. We had to cancel because of this
So sorry that you had to change your plans about Disney in Florida. This cancer isn’t good at all and I’m sorry that you are struggling with it at this time. My thoughts and prayers go out to you Angela, Donna. ( a big hug) x
Hello Sweetheart . How are you? Silly question Jane. I know you’ll be struggling. I just hope you’ll find comfort and peace one way or another. When my mum died my dad and I would wallow in each other’s grief. A chosen torture we needed at the time. I’d like to say time is a great healer but I just can’t.
Hi Angela. Hope your hand feels better now. Bless you. Also, really hope you manage to go on your cruise & find someone to look after the puppy. Where are you off to?
We were supposed to be going on one in September for our Pearl Anniversary but it’s been cancelled. We’ve booked to go to the Lake District instead ☺️
My birthday is December too. I was diagnosed a couple of months after my 51st birthday & felt so scared about not making it to 52. I’m 54 now.
Like you, this yukky disease certainly makes me more grateful for birthdays ( & other days).
Good Morning Different Girls, my hand is much better and up to now I’m feeling well after Carboplatin on Tuesday. The rot usually sets in at the weekend so fingers crossed 🤞 The cruise is on The Disney Magic. Just for 4 days/3 nights round the UK. We couldn’t leave the puppy (Jasmine) for any longer. I’m going to risk basic insurance without covering cancer which is so so much cheaper a few hundred pounds for my husband and I. The oncologist says I’ll be fine., which is reassuring. I’ll have to have a letter from the GP to say I’ll be fit to go. 🤣 sounds ridiculous doesn’t it ‘fit to go’ You’re so young to have to tackle this disease but at least the young have a much better chance of survival and many more years of hope for a cure being found.
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