Scan results. : Hi all. Got my scan results... - My Ovacome

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Scan results.

Suzanne333 profile image
97 Replies

Hi all.

Got my scan results today. I’ve got tumours in my peritoneum. I don’t know the size or how many. I didn’t ask. He didn’t say.

Course of action is weekly taxol. Bye bye little bit of hair. Thought I’d opt for weekly as can get it done in my summer holidays off work and it will be two months rather than four.

Hopefully after the chemo I’ll be able to have niraparib.

Keeping my fingers crossed for that.

I hope all you lovely ladies are doing ok.

Love and hugs to you all. Xxxx

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Suzanne333 profile image
Suzanne333
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97 Replies
Luchie profile image
Luchie

Hi my lovely, sorry to hear this but at least you already have a treatment plan. Still feeling rough from my chemo a week ago. But these bloody gremlins will have no scape and will die from chemo! You are a very positive person, so I'm sure you can do it again. As I've said before you are my role model. Hope to see you soon. Sending you big hugs.

Take care

Luchie😘😘

Suzanne333 profile image
Suzanne333 in reply to Luchie

Hi Luchie

Aww I hope you start to feel better soon. I’m sure you will. Imagine the discomfort is the cancer cells dying. Bloody things.

Keep strong lovely lady. Will see you soon.

We can go for lunch. Not a chemo lunch. Lol.

Sending you big big hugs xxxxx

Kryssy profile image
Kryssy

Hi Suzanne. That's bum news but there's another fighting mechanism lined up so some good news. I did weekly Carbo/avastin (although the avastin did bugger all) and it's easier on the system although you can't plan to do something for a whole week. Have a good cry and lots of hugs and you'll find you'll just get on with it. Having had the "regrowth etc etc" news just 3 months after I finished chemo in January, hubby and I got legless, cried half the night, swore at the cancer, but not each other, and the next day we were fine. Haven't cried since. Just had my second dose of carbo/carlyx today and feeling more positive than I did the first time around to be honest. Apart from yesterday when I was in a plane all by myself and bricking it, I feel great emotionally even if the old body is not 100%.

Will be thinking of you and wishing you well soon.

Big love

kryssy xxx

Suzanne333 profile image
Suzanne333 in reply to Kryssy

Hi Kryssy.

Yes it’s a bugger when it comes back so soon.

I’m sort of relieved though that it’s not spread anywhere else.

I think we all have so much to deal with with this disease. It’s relentless. Just got to keep strong.

I hope you are ok. Keep positive. I’m thinking of you. Big big hugs xxxxx

Kryssy profile image
Kryssy in reply to Suzanne333

And you. Liver and lungs still clear and heart check again today and all good. I'll be fine once hubby is home. He's on the plane at Stansted going nowhere right now. Delayed. Having been cancelled twice last week and standing in a queue for 8 hours on Stansted's Sunday Shambles to get replacement flight, then not being able to fly together, it's worn me to a frazzle but O'Leary has a big fat bill on its way next week. Cancer is easy peasy compared. Xxx

harpist_UK profile image
harpist_UK

I found weekly taxol very do-able - I only had 6, though as it wasn't strong enough to kick my cancer. I didn't lose my hair on it either - it's not inevitable. Good luck!

Suzanne333 profile image
Suzanne333 in reply to harpist_UK

Hi.

Oh. What did you have after the six taxol? Did they give you another chemo?

I do lose my hair on taxol. My eyelashes is what I miss the most. Xxx

harpist_UK profile image
harpist_UK

What happened after the six taxol? How long have you got? :) Radiotherapy on a lymph node, assessment for Forward 1 trial and non-acceptance, breast mets, started the Rotterdam regime (cisplatin and etoposide) mid April, then got diarrhoea infection and sepsis which halted things. Bowels never returned to normal so they did a colonoscopy yesterday and discovered a tumour in the sigmoid colon - now awaiting advice from colorectal, so no idea if the Rotterdam has been abandoned forever or what they will do. I have certainly had a lot of action this year - been very difficult!!!

I lost my hair on taxol the first time because it's a bigger dose, but you may find the smaller dose of the weekly taxol affect you a bit less.

Suzanne333 profile image
Suzanne333 in reply to harpist_UK

Crikey. You have been through it.

I hope they sort the tumour out on the sigmoid colon. I guess it’ll be surgery? You’ve certainly had one thing after the other. You need something to go right now.

I’m thinking of you. Please let us know how you get on. Big big hugs xxxxx

harpist_UK profile image
harpist_UK in reply to Suzanne333

Thanks, Suzanne. I spoke to the colorectal CNS today and felt reassured - there are options of bowel stent or possibly surgery but need to await MDT advice. That will take 10 days or so, so going to do some nice things to take our minds off it. We are kind to ourselves in between the appointments!

January-2016-UK profile image
January-2016-UK in reply to harpist_UK

Hello Christine, It's the waiting, so so difficult. Fingers crossed for a speedy decision operation wise, so you can get back onto chemo.

Look forward to hearing about your nice distractions!

harpist_UK profile image
harpist_UK in reply to January-2016-UK

Thanks, Helen. I can't believe the number of twists and turns in my story! Hope you are doing ok.

Suzanne333 profile image
Suzanne333 in reply to harpist_UK

That’s really good that they reassured you. They’ll have a plan for treatment. Until then, yes be kind to yourself. Treat yourself. Pamper and spoil yourself. Xxxx

harpist_UK profile image
harpist_UK in reply to Suzanne333

All the way :)

Maus123 profile image
Maus123 in reply to harpist_UK

That's a complication you did not need. Sorry Christine. But if surgery is possible, ideally without stoma, that could be a solid option, no?

Hope the MDT comes up with a good plan for you.

Hugs. Maus

harpist_UK profile image
harpist_UK in reply to Maus123

Thanks, Maus. I learned a lot from the colorectal nurse about how that department does a lot to 'patch people up'. A whole area I didn't know about - well, it's not normally discussed among the general population ...! x

Janet235 profile image
Janet235

I always ask for a copy of my scan results....as I do like to know how it compares to the previous.

I wonder if you are having the third of a dose taxol which is normally over 18 weeks - to equal the other option of 6 full doses over 3 week periods - and the one which most women seem to get when first diagnosed along with carboplatin.

However on your reckoning it seems to be a different timescale.... ?? So different dosage option?

Weekly x 18 taxol was good for me - apart from hair loss, increasing peripheral neuropathy and finger nail lifting... plus unfortunately I recurred within 2 months of finishing. Just seems to be the way with me and of course not typical for everyone.

Have a look at Bev's ( Beewild ) posts as she is on this but having some additional drug soon to increase effectiveness of treatment. Worth asking about I think...

Good luck with it all... hope it works out for you

Janet x🌈

Suzanne333 profile image
Suzanne333 in reply to Janet235

Hi Janet.

I recurred quickly before when in taxol only but he said if I get a partial response then I can have the niraparib. I think he’s just very keen to get me on the niraparib. I don’t think. He’s too worried how to get me there.

I’ll have to see how it goes. He’s a good consultant. I like him. He seems to want to push walls down.

I hope you’re doing ok.

Big hugs xxx

Kryssy profile image
Kryssy in reply to Suzanne333

I wonder if the trial that Lorraine did has made the cells more responsive. Haven't heard from her yet. Xxx

WoodyB profile image
WoodyB

Today must be the day for all Suzannes to see their consultant - we were there today as well. I think you knew it was back, and perhaps not as bad as you feared? The weekly taxol won't be as hard on you as the bigger 3 weekly dose and then it will be great if you can get on to niraparib. When do you start the taxol? Then those pesky cancer cells will surrender to the big bad taxol gunning right after them xx

Suzanne333 profile image
Suzanne333 in reply to WoodyB

Hi.

Aww thank you. I’ll start taxol in two or three weeks. Just want to get it done.

How are you? How did you get on with your consultant? I hope everything is ok xxxx

WoodyB profile image
WoodyB

Hello again Suzanne, good that you'll soon get going on the taxol - once you've got all the prosecco out of your system! (When the taxol bubbles up, my Suzanne pretends it's IV prosecco).

Suzanne has been on olaparib since October and gets her bloods checked every 4 weeks. Her CA125 was down to 12 this time, so we're obviously really pleased.

Wishing you well xx

Suzanne333 profile image
Suzanne333 in reply to WoodyB

Hello.

You’re Suzanne’s husband. I remember now. I have chemo brain still I think.

I’m so pleased she’s doing really well on olaparib. I can’t have that one as the NICE. Guidelines say you have to be platinum sensitive. I’m not exactly platinum resistant. My tumours aren’t. I am. I had an anaphylactic shock with carbo. Niraparib guidelines are worded slightly differently so u should be eligible for that. Here’s really hoping.

I’ve not got any prosecco. I might go to the shop and get some. I hope your Suzanne keeps doing really really well. I’m glad she likes prosecco too. X

ZenaJ profile image
ZenaJ

Sorry to hear, Suzanne. Lovely summer you're in for. The weekly sounds like a good idea. I'm sure it will all go okay. All okay here.

Thinking of you. Hugs, Zena xxx

Suzanne333 profile image
Suzanne333 in reply to ZenaJ

Hi Zena.

I don’t mind going to chemo. I told my friend it’s like going to the shops. Lol. 😂

Aww I’m glad you are ok. Sending you many hugs back. Xxxx

ZenaJ profile image
ZenaJ in reply to Suzanne333

Thank you. At this visit to the shops you should come back with less than you went with. At let's hope there's no returns. xxxx

Suzanne333 profile image
Suzanne333 in reply to ZenaJ

Lol Zena. That’s true. Good way of putting it. Certainly don’t want any returns Xxxx

Emalou71 profile image
Emalou71

Hiya sorry to hear it's back so quick 😫, I am starting weekly taxol on Monday I only finished carbo / Gem in Febuary. I went on Olaparib but this didn't work this is my 4th round of treatment. I have been told I'll be having 24 weeks of the taxol and I have just been accepted for a phase one trial drug to work along side the taxol. I'm hoping it's tolerable and not to nasty.

All the best xxx

Suzanne333 profile image
Suzanne333 in reply to Emalou71

Hi.

My last chemo was end of Feb too.

Wow 24 weeks of taxol. What’s the other drug? Will it make the taxol work better. ?

I’m sorry the olaparib didn’t work for you. Could another PARP work better?

I’m wishing you all the best and here’s to you getting very good results. 👍🏻👍🏻

Big hugs xxxxx

Emalou71 profile image
Emalou71 in reply to Suzanne333

Hiya,

It's a trial drug called Boston 172722 and yes they hoping it assists taxol in getting tumours shrunk. First one today so far so good 😀

I'm not sure yet what drug they will go with at the end of the 24 weeks but we have plenty of time to work it out (24 weeks of it lol)

Hoping you get good results and get on the niropbarp xxx

Lizz49 profile image
Lizz49

Hi Suzanne,

Sorry to hear it’s back but sounds like you have a very supportive oncologist, so here’s hoping his plan of the weekly taxol and then niraparib will do the trick for you this time.

I’m currently on taxol/carbo and actually finding it ok so far...cycle 4 on Monday then scan results Wednesday so I’m a bit anxious about that but hoping for a clear scan 🙏 I’m wishing you all the best of luck for your next round of treatment and here’s to a very successful lot of chemo for the both of us!

Big hugs

Liz Xx

Suzanne333 profile image
Suzanne333 in reply to Lizz49

Hi Liz

Thank you for your message. I’m glad you are doing ok on the carbo and taxol. I had those first line and just felt very tired for about 4-5 days after.

It’s always a very anxious time getting scan results. You’ll be ok. Keep positive.

You’re doing really well. 👍🏻👍🏻👍🏻

Big hugs xxxxx

Yoshbosh profile image
Yoshbosh

Hi Suzanne,

I’m sorry the scan confirmed what you suspected anyway 🙁 However, having a plan in place must be reassuring? Although my scan was clear, I felt better for discussing future treatment options with my oncologist (for me, carbo/caelyx, or a clinical trial), as it can only be a matter of time now.

Do you have a start date? I hope you can enjoy a bit of time before you do.

Chin up chuck!

Vicki x

Suzanne333 profile image
Suzanne333 in reply to Yoshbosh

Hi Vicki.

I knew it was back. Tumour markers were so high. I should start treatment in two or three weeks.

I’m glad your scan was clear. It is good to discuss next treatments etc but I hope you won’t have to have any more treatment for a very long time.

Hugs xxx🤗🤗

Yoshbosh profile image
Yoshbosh in reply to Suzanne333

My CA125 is 400 now, so despite the scan, my onc suspects something’s happening, we just don’t have any proof yet 😕 Like you, if I do OK on the next chemo, then she’s going to try a PARP (Olaparib for me as it has just been licensed for use in non-BRCA.)

Suzanne333 profile image
Suzanne333 in reply to Yoshbosh

If you feel ok then just keep an eye on it. Best to postpone treatment if you can.

That’s really good news about the olaparib. My oncologist really rates these PARP inhibitors. He never rated avastin.

Thinking of you xxxx

SarahsJourney profile image
SarahsJourney

Sending love and wishing you all the best with the next round of chemo.

I’ve decided I don’t want any more as my last 3 of Carbo/Caelyx pretty much crucified me. Still need to pluck up courage to face oncologist and CNS but for now I’ve stuck my head in the sand and am trying to pretend all in well.

With love

S xxx

Suzanne333 profile image
Suzanne333 in reply to SarahsJourney

Hi Sarah. Oh I’m so sorry. Could you not have a different chemo. Something less harsh. You might be able to tolerate another chemo much better. Ask your oncologist. I’m sure he will give you some options.

Sending you a big warm hug. Thinking of you. Xxxxx

SarahsJourney profile image
SarahsJourney in reply to Suzanne333

I’ve been offers gemcitabine with cisplatin but I’ve thought long and hard and don’t want it. Response rate 30-40% but I run the risk of 6 months of feeling rubbish, only a 13 day break between sessions and I want ‘some’ quality of life.

I’m going the holistic route and hoping to be more accepting of my mortality xxx

Suzanne333 profile image
Suzanne333 in reply to SarahsJourney

I’m so sorry Sarah. I can understand though. I think the holistic route is very good.

I’m thinking of getting cannabis oil but don’t know where to get it.

Could you try that?

Xxxx

SarahsJourney profile image
SarahsJourney in reply to Suzanne333

Suzanne I did 3 months of cannabis oil, started Dec last year. I do believe it impacted slightly on my tumour marker but it made me feel quite horrible and I lost my appetite completely. I still have 2 full 5g syringes of pure oil and a shedload of suppositories so am debating whether to restart but am not quite there yet as my appetite is still poor. I lost 2 stone quite rapidly and don’t really want to lose more if I’m honest x

Suzanne333 profile image
Suzanne333 in reply to SarahsJourney

I can understand that. I dread losing weight. It’s good to try and keep strong.

Maybe try it again when you can. You must do what’s good and right for yourself.

Much love and hugs xxx

Yoshbosh profile image
Yoshbosh in reply to SarahsJourney

Sarah, if you were to be persuaded to give chemo another try, ask if you can skip the day 8 Gem top up. My onc and I agreed from the outset that I wouldn’t have it so I had the full 3 weeks in between treatment.

I think it’s the cisplatin that’s the bitch in the combo you’ve been offered. I honestly felt OK on carbo/gem compared to carbo/taxol, but I wasn’t dreadful on carbo/taxol, just found it harder work. Having carbo/gem was pretty easy in comparison.

However, I totally respect your quality of life decision, so I’m not trying to put thought in your head, just letting you know of an option if you feel yourself being swayed in that direction xxx

SarahsJourney profile image
SarahsJourney in reply to Yoshbosh

Thanks but my mind is made up re chemo, I just don’t wanna put my body through that any more. i debated myself long and hard, And instinctively for me I just feel it’s not for me. Nothing has really worked for me since diagnosis in Oct 2016, the Carbo/taxol dampened it for maybe a couple of months, Avastin didn’t halt it, even Olaparib didn’t work and my last chemo showed my CA125 jump from 440-711 so that’s it. No more for me. Am as happy with that as I can be. Instead I’m pursuing the root of what switched cancer on in the hope I learn something and may be able to switch it off xxx

Yoshbosh profile image
Yoshbosh in reply to SarahsJourney

Excellent 😘

harpist_UK profile image
harpist_UK in reply to SarahsJourney

Sounds better than cisplatin!

tarney profile image
tarney in reply to SarahsJourney

Sarah - My stage 3 (4?) cancer has returned after 1 1/2 years of remission. Original carbo/taxol was a bear, and now on carbo/doxil, but with few side effects. Despite tolerance to these drugs, my high CA 125 #'s are not going down, but up (into the 500's.) I am trying to eat a plant-based, whole food diet with very little meat and dairy. Perhaps you might check out Chris Wark's nutritional healing plan on his Chris Beat Cancer website - to weed through and possibly add to your repertoire of healing. Also, please tell me if you have discovered what the root is that switched cancer on.

Theresa

January-2016-UK profile image
January-2016-UK

I found weekly taxol reasonably easy to tolerate. Hope it's the same for you. Sorry about the hair but if it works, it's worth it. If not, the niraparib.....good luck.

Suzanne333 profile image
Suzanne333 in reply to January-2016-UK

Thank you. I’ve had taxol twice before but three weekly. I’m hoping maybe a different regime might be a little more effective. Oncologist said it makes no difference but I thought I’d do it weekly for a change.

I hope all is good with you xxxx

Welshandproud profile image
Welshandproud

Sorry to hear this but I think the weekly taxol is a good idea. I had it and found it very doable. You get in the zone and keep going. It worked for me anyhow. Hammer the little bugger to bits wherever it's lurking xxx

Suzanne333 profile image
Suzanne333 in reply to Welshandproud

Aww thank you. Yes I do want to hammer the little gremlins.

Hugs xxxx

Maus123 profile image
Maus123

Weird but my first thought is: I'm glad for you, Suzanne, because it's only in the peritoneum.. phew. So assuming the recurrence was a given due to high ca125, this is actually good news.

Just like I was really happy when I received confirmation that mine was limited to the lymph nodes. It's the little things, eh.. ;)

Hope either the taxol or the parp inhibitor will beat it down again, and that you feel well during treatment.

Xx, Maus

Suzanne333 profile image
Suzanne333 in reply to Maus123

Hi Maus.

Yes at least it’s not spread. I guess that’s sort of a bonus.

I should be ok in the weekly taxol. Fingers crossed.

I hope you are doing ok. Keep positive.

Sendingyou very big hugs xxxx

Salmon45 profile image
Salmon45

Hi Lovey I am on weekly taxol. 6 rounds of 3. One per week for 3 weeks then 1 week break then off again so it does take me up to October. I have just finished 1 round of 3. Good luck. I have felt quite well on it so far which is good 😁 sorry to hear you are back here again xx

Love Maxine xx

Suzanne333 profile image
Suzanne333 in reply to Salmon45

Hi Maxine. I will be doing the same regime as you. I hope you are doing ok and continue to do do.

Big hugs xxxx

Salmon45 profile image
Salmon45 in reply to Suzanne333

Hi Suzanne sorry to hear you are back on treatment bless you. I have had my first round of weekly taxol and going into 2nd round on Wednesday. I have tolerated it really well so far compared to other treatments. Hope you tolerate it well to. I have weekly for 3 weeks then a week off then round again.

Lots of love

Maxine

HI Suzanne , I can't add any more to all the best wishes from our lovely ladies, just to say thinking of you and and take care Lorraine xx

Suzanne333 profile image
Suzanne333 in reply to lorraine71-Australia

Aww thank you lorraine. I hope you are doing ok. Big big hugs xxxx

lorraine71-Australia profile image
lorraine71-Australia in reply to Suzanne333

Thanks Suzanne, I'm ok back on Carbo/ Caelyx had my 2nd one yesterday so I'm on my 3 days of steroids, so managed my part time job to day and while I'm on steroid I will do some gardening to morrow. Take care 💙💙

SCWI profile image
SCWI

Dear Suzanne

Just to say sorry about your scan results. I am so pleased you have a plan going forward and that it works brilliantly for you. You are so upbeat and positive, I am sure that will make a big difference too. I loved your poem, that’s the spirit we all need! Love Sophia xx

Suzanne333 profile image
Suzanne333 in reply to SCWI

Hi Sophia.

Ahh thank you. It’s a bummer to have another recurrence but I’ll get on with it.

I’m glad you like my poem.

Hope you are doing ok. Big hugs xxxx

Coldethyl profile image
Coldethyl

Sorry to read that you’re back on the treatment hamster wheel - good luck with it all xx

Suzanne333 profile image
Suzanne333 in reply to Coldethyl

Thank you. Yes it is like a hamster wheel. Round and round. Get off for a bit then back in again. Lol.

I hope you are doing ok. Xxx hugs xxx

Coldethyl profile image
Coldethyl in reply to Suzanne333

I’m on the scan rescan scan treadmill - elevated CA125 but nothing showing / I’ve so much other stuff going on with endometriosis and hernias etc that I’ve told onc not to rely on me reporting symptoms - living from test to test is a nightmare - I really don’t think they get that no one can live in the moment 24/7 - onwards and upwards for all of us x

Suzanne333 profile image
Suzanne333 in reply to Coldethyl

You have got a lot going on. I’ve got a hernia too. I need my head chopping off and putting on a healthy body.

It is horrible having test after test.

Thinking of you keep positive. Hugs xxxx

Coldethyl profile image
Coldethyl in reply to Suzanne333

Thanks - we just keep going, don’t we?! It’s the lack of that choice that gets to me some days - and yes if they could just stick my head on a better body - preferably one that’s about 24 , slim and with endless legs! X

Suzanne333 profile image
Suzanne333 in reply to Coldethyl

Yep we keep going. We have to.

That’s the sort of body I want too. Knowing my luck they’d put my head on some old man’s body. 😂

Keep smiling. Xxxx hugs xxxx

Coldethyl profile image
Coldethyl

Yeah I’d probably get put on Steptoe ‘s body x

Suzanne333 profile image
Suzanne333 in reply to Coldethyl

😂😂😂😂😂xxxxx

Debonair1 profile image
Debonair1

I found wkly taxol the kindest of all the treatments I have had , no down days was tired in the evening but that wax all really.

I used the cold cap with wkly taxol, was ok , would not hesitate to use cold cap again.

Hope you shift the invading buggers and get on to Niraparib. Xx

Suzanne333 profile image
Suzanne333 in reply to Debonair1

Hi. Thank you for your message.

I think I’ll be ok on weekly taxol. I was fine in three weekly taxol and worked through it. Only having the chemo day off work.

I’m hoping so much that I can have niraparib.

I’d love to get a year on remission.

I don’t think my hospital do the cold cap which is a shame.

I hope you are doing ok now xxxx

Maxjor profile image
Maxjor

Thanks for the update Suzanne--was waiting to hear. It sounds silly I know but I was relieved to read where it is (only!) and hoping the weekly taxol knocks it out! I missed my eyebrows and eyelashes too when I was on Frontline--I had eyebrows tatooed on (some remain today although it mostly fades after a year) and I learned how to put on false (yet real looking) eyelashes when going somewhere other than work or being home. Something to think about if it will make you feel better. When will you know if you can have Niraparib next?

Thinking of you and sending lots of hugs.

Judy

Suzanne333 profile image
Suzanne333 in reply to Maxjor

Hi Judy.

Yes I’m relieved that it’s not spread to any organs.

I’m not sure when I’ll hear about the niraparib. I don’t know if you have it alongside chemo or after. I’ve a feeling it’s after. So probably September. Hopefully.

I might get some false lashes. I can draw eyebrows on ok but look like a fish without eyelashes. I love my eyelashes.

I’ve just bought some more bandanas ready for when my very short hair runs away.

Sending you too lots of hugs. Xxxxx

BeeWild profile image
BeeWild

Hi Suzanne sorry you’re finding yourself back on treatment again x

I’ve had 2/18 weekly taxol up to now on the CEBOC trial and to be honest apart from some bowel troubles (diarrhoea day of infusion then constipation for a day or two after that) which I’ve managed with a diet of beans, orange juice etc . I’ve been fine and have managed to carry on working x

I’ve been using the cold cap and to date not lost any hair but it is early days and didn’t lose last time for about 3-4 weeks so I’ll hold judgement on that one for a while yet x

Hope you too find the regime tolerable and may be worth asking about the cold cap as they may be able to get one in for you??

Take care

Bev x

Suzanne333 profile image
Suzanne333 in reply to BeeWild

Hi Bev.

I’m glad you are doing well on the taxol. I start it next Monday. I’m planning to keep working while on it too.

I don’t think my hospital do the cold cap which is a shame as I’ve got a bit of hair now.

Hope you are ok and still doing well on the chemo.

Big hugs xxxx

BeeWild profile image
BeeWild in reply to Suzanne333

Hi Suzanne I had number 4 cancelled today as I’ve managed to get a tummy bug aaaagh!! So I’m a bit scared I’m off for a week but doc says it won’t make any difference to the trial or the effectiveness of the taxol!

I’ve still got my hair on my head so cold cap seems to be working and to be honest I’ve even had to continue shaving my legs so I’m a bit upset that I’m still having to do that, first line was great not having to shave anywhere lol xx

Good luck for starting your treatment, stay well xx

Bev

Suzanne333 profile image
Suzanne333 in reply to BeeWild

Hi Bev.

Aw I’m sorry you have a tummy bug. It won’t make a difference to treatment.

I’m glad you e still got your hair. Not on your legs though. I hate shaving my legs.

I might make my own cold cap. Get a swimming cap and stuff it with ice cubes. Lol.

Sending you many hugs xxxxx

BeeWild profile image
BeeWild in reply to Suzanne333

Aw maybe it’s worth asking at the hospital re cold cap again? I had a giggle imagining a swimming cap with square ice cube shaped bumps on your head 😁

I’m feeling better today, typical 24hour bug that happens chemo day!

Wishing you all the luck in the world that this round of treatment gets you and me both a long remission time x I really want to book and go on a holiday! 2nd year running I’ve had to cancel my holiday with my sister, pesky OC!!

amandanewe2 profile image
amandanewe2

Hi I'm new to this group. Ive got peritoneal mets and am on 4 weekly carboplatin go for a scan in 2 weeks to see whats happening. Good luck hun in your journey

Hugs

Suzanne333 profile image
Suzanne333 in reply to amandanewe2

Hi.

Welcome to our group. You’ll find very friendly supportive and knowledgeable ladies (and some men) here. I couldn’t be without this group.

I hope you do really well in carbo. It’s an excellent drug for our cancer.

Let us know how you get on hugs xxxxx

amandanewe2 profile image
amandanewe2

thank you xxxxx

coksd profile image
coksd

Hi Suzanne so sorry to hear you are unwell hope the new treatment plan goes well for you, I know the eyelashes are tricky I used maybelline brow tattoo I have blonde hair too I also used revitlash I lost all my bottom lashes and kept a few on top so got really light weight magnetic lashes that I used for a few occasions when on when on treatment,

Suzanne333 profile image
Suzanne333 in reply to coksd

Hi and thank you. I’m dreading losing my lashes again. I felt weird without them. I might try magnetic ones.

Hoping you are doing ok.

Big hugs xxxx

Jo-Jo1-UK profile image
Jo-Jo1-UK

Hi Suzanne, I’m so sorry to read you are needing chemo again, you certainly are having a rough ride of things and must be totally gutted. I know you have a lovely support network around you which I’m sure that will help a little. Hope all goes well with your next lot of treatment, keep us informed. Best wishes, Jo xxx

Suzanne333 profile image
Suzanne333

Hi Jo.

Thank you. Yes back on chemo again. Next week. I’m so looking forward to having a longer remission if it’s possible.

I am lucky that I have a lot of support from lovely friends and family. It helps me a lot.

I hope you are doing ok.

Big hugs xxxx

Jessica-DianeB profile image
Jessica-DianeB

Sorry to hear this Suzanne, I do hope you are feeling ok and treatment is now under way, you’ve got this. Loved the poem too xxx

pattyellen profile image
pattyellen

Hi, Suzanne,

I have had peritoneal cancer for 4 years. First, it was appendix cancer, for which I had surgery, then I had HIPEC at Mt. Sinai after which the cancer remissed for 6 months, then returned. I have had 4 cycles of oxiplatin along with Xeloda. Then I had 11 cycles of Xeloda/iricontinan/Avastin. NOw I have had 90 min. of just Avastin, then in 3 weeks, 30 minutes of Avastin, which is causing my blood pressure to go up. My next treatment is scheduled for June 21, but I am "up in the air" not knowing if They are going to administer it. Isn't the waiting the most difficult? My friends and family are so with me! Iam happy to be today!

Pattyellen

Cropcrop profile image
Cropcrop

Hi lovely lady, that’s really not the news that you or us wanted for you but they’re on the ball for you and your new plan is ready.

I did my taxol weekly over 18 weeks on the ICON8 trial, it really wasn’t too bad at all, unfortunately they gave me full strength carbo every 3 weeks which was rubbish but because my taxol dose was only a third dosage I was fine even after the steroids and anti nausea take out (much rather have 🍕) had finished. I’m not sure if they’ll give you full dose or a reduced one because of the frequency. I can’t comment on the hair because of having had both drugs but I know of some ladies who only had thinning on taxol alone. They did tell me at Christies that both drugs can cause hair loss but we’re all different and hopefully you will keep yours. I found the eyebrows and eyelashes hardest, brows we can ‘draw’ lashes not so easy but I did the make up day (chemo brain stops me remembering it’s real name 😬) and they showed us how to do eyeliner that gave the impression of lashes, my neuropathy fingers gave it a go and after a few ‘panda’ eyes I got more to grips with it and I looked less alien like.

I hope you are ok on the taxol and can get the Niraparib and it’s third time lucky for you. Big big hugs lovely and lots of love ❤️Xx Jane

Suzanne333 profile image
Suzanne333 in reply to Cropcrop

Aww thank you for your message Jane. I totally agree about the eyelashes. I didn’t lose mine with first line. Not till the end and they grew back I really quickly. Second line I lost them straight away. I looked like a lizard. 😂

I hope you are doing ok. Where are you at now ?

Big hugs xxxxx

Cropcrop profile image
Cropcrop in reply to Suzanne333

I’m well thanks, 4 years since diagnosis, got permanently crossed fingers it stays this way, I’m busy packing all our worldly good into boxes, we move to the coast in Lancashire on Friday, another tick off my bucket list. Let us know how you get on with the taxol lovely, I hope you find it tolerable and not too arduous ❤️Xx Jane

Suzanne333 profile image
Suzanne333 in reply to Cropcrop

Aww how lovely to move to the coast. That’ll be great. I hope you’ll be really happy in your new home.

I had the taxol today. They said I’m having it weekly with no break. 6 infusions to start.

I’ll just get on with it.

I’m off to sleep now. Early night. I’m often very tired.

Sleep well night night. Xxxxx

Cropcrop profile image
Cropcrop in reply to Suzanne333

Night night love, sleep tight ❤️Xx Jane

Kunalj3B profile image
Kunalj3B

Hey suzanne333, what kind of scan it was? Was it ultrasound or PET or CT or PET+CT?

Suzanne333 profile image
Suzanne333

Hi. It was a CT scan xxx

Kunalj3B profile image
Kunalj3B in reply to Suzanne333

BTW my mum is diagnosed with stage 3 cancer. She had cancer cells on cyst and it's high grade serous adenocarcinoma. They removed her ovaries,had total hysterectomy, lymph nodes and omentum removed. She didn't have tumor in her cervics or uterus but they found some macroscopic deposits on omentum . All other organs are clean. I felt like sharing because you have same type of cancer. She was diagnosed just last month.

Kunalj3B profile image
Kunalj3B

Ok. I was just curious that what kind of scan would show peritoneal tumors. Thanks.

Hertsmum profile image
Hertsmum

Hi Suzanne

Not been on here much recently but really sorry to read you are going back on chemo, good it hasn’t spread to organs though. Weekly taxol - have had 3 lines of it - always found it ok and sounds like you coped with 3 weekly so you should be fine on it. Apart from hair loss! Are you sure they don’t offer the cold cap at your hospital, it is worth a go if they do. Although not much to be done about eyelashes - i’ve got hardly any and eyebrows almost gone too though I draw them on!

I’m also hoping to get niroparib next but am plat resistant so not sure yet. I have very few options left unfortunately. Nobody can believe how bad things are as I still look well and am pretty active - it’s tough even to get my own head around it!

I truly hope the weekly taxol works well and bashes the gremlins into submission!

Love

Madeline xx

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