Hi ladies

I just want to wish you all a Happy and as Healthy a New Year as possible - bring on 2012.

Its good to drop in and see what others are up to - scan and more treatment (fingers crossed!) in January for me.

Best wishes

Sue x

Hello everybody, may I join you and introduce myself?  I opened a new thread on this subject the other day in the "introduce yourself" section, but I really wanted to get onto this site.  I  am 67 yo and live in Essex, UK and have recently been diagnosed as having tumours on both ovaries, plus some areas on the omentum and outer bowel.  However, my hospital MDT  wants to ascertain whether my ovaries are the primary site or secondary to breast ca I had 15 years ago before planning my treatment, so I've just had a biopsy and await results on 22nd Feb.  I found your site about a month ago and was both heartened by all your posts, and at the same time scared - not of the treatment particularly but the outcome.  Some days I feel that I won't get through this, other days I think "No, you won't get me, you (expletive deleted!)"

The last post on your site was 28th Dec, I have been checking, so I hope you are all getting along OK

Best wishes, Hazel. X

Sorry John, knew I'd missed something, from what I've read about the aspirin it reduces the risk of developing cancer if taken for 2 years and reduces the risk of the cancer spreading if taken for 5 years! I've been on it for nearly 3 to be fair my tumours are well defined with no signs of spread ? aspirin ?luck ?would have happened anyway! who knows. With the ovarian cancer if its going to spread I have my doubts it will wait 5 years, and as it effects blood clotting as does chemo its not something anyone should consider without the onc input (as you also suggested). I find for about a week post chemo i have nose bleeds/bruising and my platelets are now really low (which is unusual) having said that i also take a blood thining injection! Hope this helps a tiny bit 

Hope Mary continues to do well and the maxalon works from day one follow this lot of chemo! no nausea or sickness tell her its banned!

Take care of yourself to, being a partner is often worse than having the disease!

jackie xxx

Hi Jackie and all,

It's great to have you back

Well I should be in hospital for chemo, but my blood count was 0.4 so can't have it. I also have trouble with my picc line as they can't get blood out of it so they sent me for an x-ray which has showed it has moved but still ok to have chemo next week. I have to have 4 days of filstagrim to get my count back up. I have the pain in my groin but I think I just get used to it as I don't take pain killers.

It's strange because I have been so ill the last few weeks and my blood count has been ok. I feel the best I have for the last few days and it's low. I certainly am  very strange.

Anyway Sharon I hope your results are good ones xxxxxx

Love everyone Eileen xxxxxxx

Hi Eileen, you do like delaying your chemo don't you lol

Still think if you can't get around/do things you need pain tabs, pain tells us something is wrong, but we already know that, so there is no point putting up with it! why not try simple stuff like paracetamol or ibrufen? (stores own brands are the same and way cheaper!) if they don't do it then please discuss it with your team. Pain will make the chemo harder to deal with (and you have enough problems with it lol) but may also lead you to stop treatment cos you've had enough when getting it sorted could leave you coping for longer. Maybe I'm just feeling like that cos I'm getting very fed up being limited in what I can do! even my past walking difficulties i could struggle though but this abdo pain just leaves me sitting in a chair with feet up all day - very fustrating!

sorry to nag!

Take care

Jackie

xxx

Hi everyone,

(Restless night after LONG day of chemo)

I have only one last comment on the subject of quality of life over quantity.  I don't want to die, of course I don't, but maybe it's because I'm pushing 68 anyway and so much older than the rest of you - apart from dear Dot - that I have a slightly different view on the subject.  I still stand by what I said before - I would rather just rely on palliative care if treatment became too much.

Anyway, poor Jackie and Eileen, you seem to have more problems than the rest of us put together, and I can only admire your resilience, and hope things do improve, and that you get to have everything done today, Jackie

Incidentally, Jackie, re your suggestion to Eileen of paracetamol and ibuprofen, I have been told not to take anything like that as it could mask any infection because it lowers temperature.  My GP has given me codeine phosphate, but I've yet to prove it's efficiency as pain relief, I am waiting to see if it prevents the terrible stomach cramps like those I had after last chemo. I shall find out in the next few days!   When I am not in the "danger zone" of lowest blood levels and highest risk of infection I still sneak the odd couple of paracetamol now and then after checking my temp first to be sure.  I think paracet. is by far the best as it doesn't cause the cursed constipation! 

Sharon, hope CT  result was OK?  Fingers crossed!

John, love to Mary, hope she is still OK. 

Dot, hope your leg is getting better.  Be careful!  

Love to all, Hazel xxxxxxx

Hi all

Am now the proud wearer of a porta cath, yea no more needles!!!! Chemo has been delayed till next week cos platelets 79 and need to be over a hundred, if it happens again they will try reduced dose and if that don't resolve the problem then they will remove one of the chemos (prob carbo) and hope the other works solo.

Got given buscopan (which I had already bought yesterday lol) but have to take 2 tabs 3 times a day. Dr recons I've got bowel spasm though no explanation as to why I've got it! Not one to have suffered with bowel problems till now and not much enjoying it!

Haze, I do understand I intend to stop chemo as soon as the side effects are worse than the disease and I feel my quality is compromised. I was merely saying that chemo is also palliative and can reduce the symptoms, as pain seems to be reducing Eileen's quality, then sorting the pain should increase her quality, even if she wants to continue with or without the chemo.

I hate to say it but if you have problems with constipation be wary of anything with codeine in it! co-dydramol, co-codamol, codeine phosphate etc!!! its one of the main culprits imho.

Re temp, there is lots of evidence that if you are going to have a temp it is most likely to be at 6 in the evening! so if you take paracetamol at breakfast, lunch, post temp and night you should be fine! (that's if you need it that often) taken that often it to can cause constipation

Hope that helps a bit

Jackie

xxx

Hi my name is Helen and I am 49 years of age. I was diagnosed with Ovarian Cancer Stage 3c in August 2011. My Ca level was 1750. it came down to 41 after 6 cycles of chemo (carboplatin and paclitaxol). I have not had surgery as Doctors feel it is too risky. I have been off chemo for 3 months and it has re-activated and I started chemo again today (Friday 30th) with the possibility of having Avistan alongside the chemo. My Ca level is now 1845 and I feel distraught by all of this. I thought I was doing well, I look well and in no pain. I am a very positive person and it will not beat me as I have to be here for my amazing family and friends and my wonderful 23 year old son, who have love and support me every step of the way. However, I would like to hear from anyone in the same situation and who can offer any form of support, or just let me know how you are doing.

Look forward to hearing from you

Helen

Hi Jackie,

Yea, I know what codeine does, so the old lactulose has come out of the cupboard again for next few days!  I have never had a problem with paracetamol though, probably because I don't take that many really, just as and when.  Although I do have bowel problems, owing to tumour on ovary pressing on bowel, I don't normally suffer from constipation as such, just for the few days after chemo and while I have to take domperidone. Speaking of domperidone, I've taken your advice from last month and took a couple last night after chemo instead of waiting until this morning, and so far so good, no nausea at all, touch wood!  (Hope I don't regret saying that and tempting fate!)

Glad you got something positive done today, even if you couldn't have the chemo!  Fingers crossed for next week, eh?

Take care, love Hazel xxx

Hi Helen, and welcome to the forum,

I am so sorry to hear of your recurrence, did they say why surgery was too risky? I am here supporting my wife Mary who was first diagnosed in November 2010, she had full pelvic clearance surgery followed by Carbo/Taxol treatment. She responded very well to the treatment although it did leave her with some neurapathy in her toes which has still not subsided (side effect of taxol).

We thought she was cured, but 8 months later she had a recurrence and is now back on chemo, Gem/Carbo this time because they do not want to make her neuropathy worse. She has just finished the 2nd cycle and seems to be feeling mostly well to it so far, although having a bad day today after yesterday's treatment.

Yes, the news does knock you for six and it is upsetting for the whole family, I completely sympathise and understand how you feel and I hope the ladies on this thread can help in some way. We kind of have to get used to it and try to get on with our lives although it is tough sometimes. I do hope you respond well to your treatment.

Best wishes,

John

Hello, Helen, and welcome!

You have certainly come to the right place for support and info!  If you want to find other ladies who have been in a similar situation to you, I would advise you to read through some of the stories on this site.

You seem to have a good attitude, and that can only help.  I am at the beginning of my ovarian cancer (although I did have breast cancer 15 years ago) but there are lots of lovely ladies on here who know how you are feeling right now, and I am sure they will be in touch.  (Be patient, as some of them are recovering from various treatments at the moment, and as you will know sometimes you can feel a bit rough!)

Love, Hazel xxx

Hi Ladies,

Just an update on Mary. Looks like the chemo finally caught up with her as she had an awful day today spent mostly in bed. Was sick three times this morning and has eaten nothing today. She went to bed at 7pm hoping to sleep it off as we were supposed to be going to Wembley tomorrow to watch Rugby.

I keep thinking I have given her meds at the wrong time, she has so many it gets confusing just after chemo. When should she take her first Ondansetron? Is it after dinner on the day of chemo? I gave it to her in the morning and I'm thinking I probably got it wrong.

Jackie - So you have a Portacath too now? Yes it is much easier, although I wonder if giving Mary the chemo faster may have caused her reaction. They had to slow it right down when they used her arm because the Gem hurt too much, any thoughts? Re-Aspirin, I haven't read anything about 3 & 5 years, like you say it may just be down to luck, all subjective but will discuss it with the onc in 2 weeks time.

Sharon - I hope you're results went ok yesterday.

Hope you all have a better week,

Best wishes,

John

x

Hi Ladies,

Just an update on Mary. Looks like the chemo finally caught up with her as she had an awful day today spent mostly in bed. Was sick three times this morning and has eaten nothing today. She went to bed at 7pm hoping to sleep it off as we were supposed to be going to Wembley tomorrow to watch Rugby.

I keep thinking I have given her meds at the wrong time, she has so many it gets confusing just after chemo. When should she take her first Ondansetron? Is it after dinner on the day of chemo? I gave it to her in the morning and I'm thinking I probably got it wrong.

Jackie - So you have a Portacath too now? Yes it is much easier, although I wonder if giving Mary the chemo faster may have caused her reaction. They had to slow it right down when they used her arm because the Gem hurt too much, any thoughts? Re-Aspirin, I haven't read anything about 3 & 5 years, like you say it may just be down to luck, all subjective but will discuss it with the onc in 2 weeks time.

Sharon - I hope you're results went ok yesterday.

Hope you all have a better week,

Best wishes,

John

x

Morning, John,

How is Mary today?  Poor girl, it seems to go from one extreme to another with these treatments for us all, doesn't it?

Give her my love and tell her I wish her better.

Love Hazel xxx

Morning Hazel,

Good news, Mary has slept it off and feels good again today, so we're off to Wembley to watch the Rugby

Thank you for thinking of her, have a good weekend,

John

x

Hi Everyone hope your all doin well as you know i went for scan results on thursday what a waste of a morning!

my oc wasnt there so they got a young doctor to fill her slot who could only tell me ive got to have chemo again

but couldnt say which id be havin because thats down to my oc so ive got to go back in 2 wks to see her.why

couldnt they just ring me and rearrange my appointment.my partner wasnt impressed at all!. just wont to know

dont you and get the treatment set up.

John and Mary

Glad marys feeling ok enjoy the rugby my partner and 2 of my daughters have gone to watch aston villa v

chelsea [we live in the midlands!] but my daughter is more interested in Frank Lampard! still does them good

to get out takes there mind off things dont you think. xx                                                                                                                                                                                                                                                                                                                          Hi Helen just wont to give you a Big Welcome were always here to support each other or have a moan at!

anytime day or night so i hope some of us can be an help to you  what ever the problem might be

take care sharon [julygirl58] xx

Hi All

Glad to see not to much suffering following treatments! hope the nausea tabs still working Haze!

Judy that's total c***, ring PALS and complain, if I remember rightly you've already had quite a wait and maybe they can get a senior person to prescribe the chemo and get you started. I know its frustrating but to be fair the consultant may have been ill and they didn't have time to inform people but just managed to get a junior to cover (it does happen occasionally) but I would still go through PALS and see if they can sort anything

Welcome Helen. know exactly how you feel, I'm on my 3rd lot of chemo, though only 3 months from the first beats my 8 months! have they changed your chemo this time? They changed mine after the first recurrence and I got 18 months out of the second, so there is hope. I to normally have no symptoms and feel well (though not true in the last 2 months!) and it is hard coming to terms with it when you don't feel anything, I'm of the opinion that your body tells you best and go with it. Once you accept that this is a treatment and not a cure it does get easier, regardless of what they say I think the first time we all hope for a cure or a very long remission, but when it comes back you quickly adjust and its sort of, been there done that! Eileen is our lady that finds it most difficult as she responds badly to every dose of chemo bless her, so for her the chemo is torture while the rest of us get away quite lightly. Personally I refused a prognosis (and its worth thinking about) because I don't want to count down each day nor do I want to know if I pass my sell by date (which I think I have already done!) However everyone is different but as I say have a think about it. We have all decided that the best approach is to keep positive, we don't always succeed but we do in the main and we take encouragement from dear Dot who was given the worse prognosis but has done better than any of us!!!

John glad Mary has bounced back so quick, my understanding is that the chemo is very hard on the veins not to say painful, however when given through the portacath which feeds into a much larger vein the blood is flowing faster and therefore it dilutes it much quicker. so in theory her reaction probably wasn't due to the speed more likely just the chemo its self, it is after all pretty lethal stuff! Re ondansetron, I assume this is what she now takes for nausea, start it after chemo, I think they will probably give it IV just before they start the chemo (though I can't see that giving it twice would cause sickness)

My abdo pain was bad yesterday but while I had a bad hour this morning its been tolerable since and I've managed to do a bit of housework! maybe the buscopan is working i certainly hope so. Due to the blood thinners I take my porta cath site is very swollen so I actually have a bust on one side (sorry John)

Keep well everyone

Jackie xxx

Hi Jackie.

Nice to hear from you. I am having the same chemo again but instead of every three weeks I am having it every week, and also the Avastin drug as a maintenance drug to run alongside is being sort after by my oncologist. I will try anything to help me. I have asked what my prognosis is and my onc said  it was incurable and the aim was to contain and control, she couldn't give me a time scale it but I would be the one too tell her when my body has had enough then she would be able to give me some kind of time line if I stopped the chemo. So at the moment I feel good apart from the tiredness, some nausea and mega hot flushes. I don't mind having to have the chemo as long as I can be here.

I hope your chemo gets easier for you and doesn't cause you too many problems. We have to remain positive for our own sanity.

Take care

Helen

Hi Sharon,

Good to hear from you, very sorry to hear you need to have more chemo, and feeling your frustration regarding your consultation. As Jackie said, it may be worth a call to PALS (I had to look that up - Patient Advice Liason Service). I thought that they had already made you wait far too long for your CT scan results, as I said before the technology gives instant results but READ THIS, Mary was given a CD to take to her consultation on the day of the scan, was then told the results and prescribed her chemo plan. To be made to wait that long and then come away still not knowing the results or plan of action seems to me unreasonable, even if the hospital is stretched or your onc is not there. Why was the onc not there? even if there is a good reason there should have been another onc on the team who could have given you the information you need. Sometimes we do not have the energy to complain when we feel unwell but I think you may have been treated unreasonably.

We had a great day today, went to Ikea in Wembley first, had a look around, met our friends in the restuarant for swedish meatballs etc, then headed off to the match. Our friend's family and friends are Harlequins fans, and our family support the Saracens (only because they're our local team - we know little about Rugby rules). About 16 of us altogether at the match, so a bit of friendly banter. We lost on this occasion but it was a close match, and yes it does take your mind off of things. I hope your partner and daughters enjoyed the footie.

Unfortunately the day took it's toll on Mary, probably too much too soon. She went to bed as soon as she got home (6pm) and has been feeling really tired and sick again. Hopefully she will bounce back again tomorrow and can just have a relaxing day.

Best wishes,

John

x

Hi Jackie,

Glad to hear your pain has subsided enough to allow you to get on with things.

Thanks for the advice re anti-sickness, yes Mary has Ondansetron pre-chemo and steriods but both in tablet form, not IV. They give her 2 Ondansetrons to bring home, so next time I may give her the first after dinner on the same day, and the second after breakfast. She has her other anti-sickness tabs (Metodopramride) in addition to this, maybe I shouldn't give her these until the Ondansetron course is finished. Maybe try to see what works, maybe nothing does and it just has to run it's course. I know Mary gets off quite lightly compared to some of you but still not very nice seeing feel so poorly for even short periods.

Do they give everyone "Ond", "Dom" and "Dex" to take home? I thought different things worked better for different people. Another question for the onc I guess.

Mary's port site was very swollen too (so not sure if it's to do with your blood thinners) but went down over the week leaving her dressing looking very wrinkly. The scars have healed nicely and she is glad to be able to have a shower again as she is not keen on baths.

Best wishes,

John

x

Hi John,

My sister succumbed to ovarian cancer on 29 Mar 12. During her critical stay at the hospital, I found out from her that she did not know that her oncologist team had stopped her cancer treatment. As a result, she was often frustrated after each consultation because the doctors kept telling her that her condition is normal - even when her abdomen had bloated to an extent where she could hardly walk. She underwent an abdominal tap on 13 Mar 12 and accordingly to her, the nurses administering the procedure could not withdraw any fluid because "jelly-like" fluid blocked the needle.After several failed attempts, the nurses applied a gauze to the stomach where the needle was inserted and told her to go home without any subsequent appointment to review. She continued to change the wet gauze at home by herself for about 4 days. On 18 Mar 12 - my sister's legs started swelling and she could hardly breathe. We brought her to the emergeny room in hospital where she was warded and passed away on 29 Mar 12. The following questions kept burning in my head as I struggled to accept her demise::

- Should the oncologist tell her patient about her condition before stopping the cancer treatment - so that the patient is aware and prepared for the cancer to take its due course?

- Related to the above question, should the oncologist have the "final conversation" with the patient? or is it procedural that the oncologist inform the patient's family to break the bad news?

- Are there medical protocols related to the the above procedure or they are just ethical issues to be managed betweeen the doctor and patient?

Dear samkevin,

Welcome to the forum, I am very sorry to hear of your recent loss and understand why you would want to raise some questions. Of course we are not experts here so may only be able to give you our opinions or personal experiences rather than the answers that you really want. I am guessing that you are from the USA, so it may also be possible that protocol differs a little from the UK.

To be honest, my wife Mary does not want to know too much detail of how bad her cancer is or her prognosis. She will just except the treatment prescribed and try to forget about it all and enjoy her life. So although I accompany her to consultations, I am limited to what questions I can ask because I know that the answers may be upsetting for her to hear at this stage. I feel that she is now in the "living with cancer" bracket as they could not cure it first time around and the cancer has spread. I know I will need to ask some questions at some point, but that will probably be done over the phone to her specialist oncology nurse.

So I am probably the wrong person to ask, but I am sure some of the ladies on here will give you their input. This may also help me to formulate an opinion because at the moment I haven't given it a lot of thought, so thank you for raising the questions.

I do hope we can help you in some way in coming to terms with the loss of your sister.

My thoughts and best wishes are with you at this sad time,

John

Hi Samkevin,

Firstly let me say I'm sorry to hear about how your sister died.  The circumstances must make it harder to bear.

The whole area of breaking bad news is a very difficult one.  Normally (in the UK at least) doctors try and establish how much a patient wants to know about their condition; things have moved on from the paternalistic view that patients are best kept in the dark.  So, if a patient makes it clear that they don't want to know the whole truth then they will not be told - but possibly relatives might have a clearer picture in that case, but that also depends on whether the patient is competent to understand the detail and make decisions about their treatment.  If a patient wants to know detail then they will be given a clearer picture.  However, many of us will slowly change our minds as the condition progresses, and if the medical team doesn't keep track of that then there are problems.

Telling a family member the bad news and then expecting them to pass it on to the patient is not necessarily a good idea - I speak from direct experience.  A doctor asked me to pass on the diagnosis (Stage 4 cancer) to my husband. I just refused, as I couldn't have answered any questions he had. This was not in the UK I hasten to add.

In your sister's case it sounds as if there had been some sort of breakdown in communication, either the Dr didn't check that your sister understood that active treatment of the cancer had ended, or your sister didn't hear/understand what was said.  I go to all my huband's appointments, and take notes, and we still sometimes end up with a different version of what was said: it's all too easy to misunderstand and to choose to hear what you want to hear.

Would it be possible for you to speak to anyone from your sister's medical team about the last weeks of her illness?  That might help put your mind at rest.

Expat