I would like to talk to any of you ladies out there that have had chemotherepy three times.Feeling very lonely at the minute.Big hugs lynne x
Hi
I haven't Lynne but I'm sending you the biggest of hugs you've done it twice so 3 times should be a breeze for you stay strong and keep your PMA you are the chemo queen
maybe someone will come on from the other site the advanced cancer one
not sure how you feel about going on that side yet I'm a bit reluctant to go over there not sure why as I'm sure all the ladies on that site are just as lovely as on here
keep us informed
stay strong
onwards and upwards
love Michelle
Hi Lynne
pls don't feel lonely. We all might be having a different way through this but we are here to help navigate each other. i believe in you, that you can beat this!!!
big hugs and wishing you feel my positive vibes coming your way. :)
Hi Michelle. ...thankyou so much for replying .It's just so good to put it down on here and know that someone is taking the time to reply back.I suppose I'm like clutching at straws when I put things down on here with the hope someone will come back to me with the same experience I'm having.I had thought about going to the other site but I'm a little scared to at the minute I don't know why , there probably will be someone who can relate to the question I was asking.I look at all your postings on here and I can relate to what you've had done so I can reply back saying don't worry I had that or give my opinion and hopefully give you inspiration .I haven't forgotten what it was like when I first joined I was overwhelmed by ladies going through the same as me or I was a little ahead of you and I thought wow this is great and it made my day when I read that someone was a little more on from me it too gave me inspiration.I think that we can give each other strength that unfortunately our professionals carnt ., because their are no guarantee,s and this is where this site comes in warts and all , I certainly have gained more off here than anywhere.I suppose I had a bit of a melt down yesterday as my first appointments came through the post and it just hit me .Next Monday I go for a kidney function test and then on wed I go for a pre op and Friday I go in to have my kidney stents changed then I suppose it won't be long after next week that I start my chemo again.I just hope and pray that the 3rd lot of chemo will do as the last 2.Hope your feeling well michelle I will be looking and following you all rest assured on that one.Big hugs darling xx
Hi lolli, bless you darling for getting back to me.....you don't know how much I appreciate the communication.As you can see Michelle bless her...also got back to me.Yours was one of the first ones that caught my eye when I came on here ,simply because you are staged at 2b and you was going through the treatment I had first time and boy it's good stuff in getting rid then the blast of internal brachy certainly does the trick and it gave me the all clear.Mine unfortunately after that the CNS explained it as a hidden one that lay behind I suppose they couldn't see it until it got bigger and I recognised the ache again , I suppose that's why the Recurrence in the same place and the next lot chemo cocktail sorted that also ....cervix looks good on the scan I was shown but this next one is just to the side of cervix in between my uterus and bladder so the ache would be the pressure .It really doesn't need much to create an ache as there really is not a lot of roam in there.Anyway before I go have you not had any feed back from your treatment??Do you feel it's worked?.Do let me know I'm really interested as I carnt quite believe you haven't been told maybe halfway through your treatment that it's working?I have no doubt that it hasn't like I said that 1st treatment really does kick ass . ...I just had one playing bloody pee-po with me.Big hugs lynnexx
Hi Lynne :-)
Just wanted to wish you all the best. I'm cheering you on your journey and hoping all goes smoothly for you. We have had a few good news stories here lately and I'm really hoping you will be putting yours up here not too terribly long from now :-)
Be lucky :-)
Tivoli
Hi lynne
i did go for an appointment and my dr did state he didn't see anything sinister. I will go for my first post treatment MRI in novembee so hopefully I will hear great news shortly after.
My dr also made fun of me because when I asked how everything looked from my last MRI on my last brachy he started to laugh as apparently I was humming a song when he was telling me that everything looked really well. I was apparently quite high from all the drugs. I do not remember any of this. :)
when you say that your tumour was hiding what does that mean exactly? The reason I ask is because my tumour was only found because my dr couldn't get an iud in at his office(wasn't my first one, never had an issue before)so I was put under GA at the theatre and when he was manipulating my uterus as it was tilted he noticed an area and took a biopsy.
My oncology team explained later that my tumour was higher up on the outside of my cervix and not in the transformation zone. I have squamous cell carcinoma so it should have been picked up on smears but it was hiding so my smears were clear. I also had absolutely no symptoms and my radio dr explained that happens sometimes. He also mentioned a lot of info out there about cc is debatable but dr's must follow protocol. I have had a few good conversations with him about cc but all of it is off the record.
Anyways I'm rambling, I do want to say though... I work for a pharmaceutical company and I see how easily things get done to save money or make money but the cocktail of cisplatin and topotecan is a good one and I believe you will have a good response to it.
Best of luck
Hi Lynne It is lonely. I can't find anyone else who has trodden the exact same path as me. I have non HPV related cervical cancer which did not respond to that horrible radiation treatment. I am still here though. I have a friend who was diagnosed with breast cancer 2 weeks after me. She has been a Godsend. I constantly bag her for having the sexy disease. Anyhow what I'm trying to say is that we don't need to be going through the exact same things to know what it feels like. I am so glad I found this site. I feel like I know the women on it because we share the same emotions. Keep coming here I want to know how you are getting on. Jayne
Hi lolli,.......I wish I had the guts you have to ask certain questions I have noticed on your stories.You seemed very queued in on it all.I think even my Consultant seemed shocked when I had Recurrence because the Radio/chemo/brachy worked I had the all clear and it was between that and my second 4 monthly check that I started with lower back pain and what seemed like period pains ....I did contact the hospital and spoke to my CSN who booked me in to see a registrar because consultant away.He examined me and said "all clear up there all nice and pink and gave me no explanation of the aches I was having.My CSN rang me at home the next day to see how I'd got on,she was suprised he hadn't sent me for a scan so she booked me in to see my Consultant the following week.I had the scan done and obviously she told me that I had Recurrence in exactly the same place???it still annoys me to think I was given the all clear.That's when on the way I said to my CNS ...I carnt believe it when I was told I was all clear only 2 wks ago.You see lolli this is where I feel so ignorant to it all because of being to frightened to ask questions. All I basically know when I was first diagnosed that it was staged at 2b and it was high up and on the outside of my cervix.That seems clear??but my CSN said that I could have had it hiding behind something and thats why it possibly didn't show up on scan.And when treatment started ...chemo cocktail I was scanned half way through and got positive feedback of them because they said was really pleased as the tumour was shrinking right down.Now again I had to contact hospital with this ache that started in my groin and obviously again cancer back and consultant said reactivation of cancer and like I said good to know it's not in any major organ and this tumour is in between my bladder and uterus and that's the pressure I'm feeling.I just feel right now that I'm following tumours around my body.I bet your really fed up hearing my story and I'm sorry to go on but I get such positivity from your replies. I hope your doing ok and thank you for the research on my new chemo cocktail it's helped a massively. Big hug lynne xx
Thanks tivoli .....I appreciate the good stories on here it really does give you that push we sometimes need.Hoping all well with yourself.Big Hug lynne xx
Hi jayne. ...thanks luv for your reply.I do agree this site has really helped me at times.Can I ask has the toxol affected your feet ????I don't seem to know anyone that has mentioned numbness,pins/needles in your feet and feeling like their in blocks of ice??I know luv that we all have a different story to tell but I think because I'm a wimp when it comes to asking the questions I think I should know from my consultant, I think I get answers off here.Hope you and your friend are both doing well what a fantastic support you must be to yourselves.Like you said it is lonely sometimes I try and keep busy and most of the time I block it from my mind but just every now and then it bloody hits you like a ton of bricks but I've learnt to cope now .....thankgod because I hated that at first and started having mega panic attacks but like I say I'm over them now I don't get so worked up and I don't think about the things I used to before so I deal with it pretty well now.Well it will all start again next week when the hospital becomes my second home .Kidney function test,pre op,then op to change my stents then I should be good to go for the chemo to start probably in the next wks and for the second christmas on the run.Thanks for your time jayne I so appreciate it Big Hug Lynne xx
hi Lynne My feet give me hell. After about the 3rd month standing was painful. I presumed it was the chemo so waited out my time I didn't tell them because I wanted maximum dose. Apparently the percentage of gynae patients who receive maximum dose is quite low Because of the side effects. Anyhow after treatment saw the GP who diagnosed a seperate condition plantar fasciitis of both feet. I got foot splints and now 3 months later that heel pain has gone but I still have general foot pain plus I have migrating polyarthritis in All my joints including the feet. So am not happy with it. They are looking into it and I have dodgy liver function results so that may be linked. It's all a mystery to me. Jayne
Hi Lynne
I just wanted to message you to send you lots of love and support. Like someone said earlier your the chemo queen and im sure this time round you will handle it as well again.
I dont have any advice to offer you...just a listening ear and cyber hug but your iny thoughts and now from previous chats we have had on here that you are one strong lady and have the right positive attitude it takes to get through anougther bout of chemo.
I still havent started my chemo.....my oncologist is still saying that its my choice when to start but whats the point in starting and making me poorly...so im waiting...at least until after christmas anyway. I dont know what to do really?!
Keep going Lynne were all behind you
LeeAnne xx
Hi Lynne
Just checking in to see how your doing and still sending that hug hope your staying positive and strong I know it can be a bit scarey when them appointments start coming in but stay grounded
lolli is right ask as many questions as you can when you see your consultant that's what they are there for I'm constantly asking mine questions Im beginning to think he's a mind reader as he seems to know what I'm going to ask but as he says he's been doing it a long time so knows what questions are coming either that or I'm so predictable lol
i even try to push him to answer what's further down the line but he just keeps telling me there's other treatments but let's get to the end of the chemo 1st
I was told the same as you that the 1cm tumor in my para aortic lymph node in my pelvis was probably already there last year but was to small to be picked up on the MRI I have no idea how the 2.5cm tumor got to my diaphragm though maybe it was trying to get to my lungs but do you know what I had a good 12 months before I was told I was palliative this is why I think you can do the chemo again I know it's hard but if it's what it takes to have that bit of normality In between then it's worth the fight
ive just started with the feet problem had my 6th cycle last Friday and the tingling in my feet have gone to pure shooting pains f a few seconds so if my scan on the 7th is good and I'm to stay on the chemo I'll be telling him to reduce the taxol I seemed to have had more problems with my nose this last lot as well apparently the chemo is stripping my linings so it's stripped the inside of my nose going to have it froze over when I'm back from my holiday just so it doesn't keep bleeding
stay focused stay strong keep fighting were all in this together your doing amazing
keep us posted big hugs
onwards and upwards
love Michelle xx
Hi leanne.....I know you say it's your choice to start chemo and that just shows you the difference in us all because firstly I didn't have the choice .....well I don't think so...my Consultant just said I've booked you in for this and so on , so I've just gone along with it but to be honest leanne I am glad to get on it asap because this ache I get like period pains is there all the time and taking ibuprofen is the only thing that eases it and it seems (well it has so far)that as soon as I start chemo it goes away and I feel o top of the world this is why I carnt wait to start it.But it just shows you how different we all are when decisions have to be made.Hope your feeling well Big Hug lynne xx
Hi Lynne
thinking of you today hope the kidney stents change goes ok tomorrow and you now have more info on the next round of chemo
big hugs stay positive
onwards and upwards
love Michelle xxx
Hi michell thanks for remmbering me.Kidney stent op got cancelled for the 4th until monday 7th.Feeling much more positive about thing now ive got used to it.Just want the chemo to start ,thats me and the way i think i appreciate other ladies feelings to being on chemo but mine are if ive got to have it......get om wih it , also im taking ibuprofen regular every 4hrs so tha tells me that the pain is not going to get better just0 worse so thhe sooner i start chemo andd hopefully relieves thhe pressure im good to go again.My Appointment for chemo unit is on tuesday so hopefully they will have a plan for me.My worry still lies with my feet and them still not fully recoverd from the periphial neropathey caused by one of the chemos last tim e.God knows what willl hnappen to them.Im feeling ok at thhe moment and keeping busy so,s not to think too much.How are you doing?please reply and let me know.Big Hugs are sent your way.love lynne xx
Hi Michelle......i dont know how but ive just read the post you sent me on 28th oct i swear its only just come through as i know i would have replied to this because you mentioned about your nose and Omg....i too have had problems it was constantly dripping it really got me down when i started to eat or when i went outside i got through no end of tissues and it got embarassing at times it would jjust run without warning and if i dint have a tissue ready i was always apologising.I did have the odd blleed but nothing too much o worry about.It just got too much .I spoke to the nurse on chemo about it who explained this was because i,d lost my nose hhair so theefore nothing to protect my nose.I took this as the explanation and when my hair started growing i was pleased to think this constant drip would stop...but no after about 2months it was still the same so i went to my locall doctor who said likre you that i lost the lining up my nose so he gave me spay i had to put up my nose about 3 times aday and cream that i had to use allso.It has got a bit better and feels drier but i feel its still not 100% right.Im interested to know what you are having done to yours...what do you me by having it froze?i think i might have to hve something donevto it to feel right again.please can you let me know what this involves.big hug lynnexxxx when do you go on hols?.x
Hi
good luck for Monday and Tuesday I've started with the feet problem from the taxol its not to bad but will mention it to the consultant on Tuesday
I didnt have any problems with numbness or pain in my feet from the cisplatin so hopefully you should be ok
i have a scan on Monday as I have finished all 6 cycles of the chemo mix and see the consultant on Tuesday with some results then it will be sent off to the MDT meeting while I'm on holiday to discuss what's the next course of action
big hugs Lynne stay positive
onwards and upwards
love Michelle xx
Hi Lynne
we must have been typing at the same time today lol
im off on holiday on the 15th so looking forward to having a break
I'm not sure what happens when they freeze it I just know that it will stop the bleeding but I will let you know what it entails as soon as I know
onwards and upwards
love Michelle xx
