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

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 John and Hazel.

Thank you for replying. It is good to hear from people going through the same sort of things. The doctors chose not to do the surgery as it is wide spread in the abdomen and they couldn't be sure it would help me in fact it wouldn't be conducive to my health. So they felt that chemo would help to contain and control the disease as they cannot cure it. But as I have said it is as started up again. I feel tired tonight after having chemo today but that is all so I hope that is all I get. John I hope your wife gets through the chemo well and my prayers and thoughts are with you both. Hazel I understand about the quantity and quality thing and maybe further down the line I will have to think about it too, but not yet as I feel pretty good. Will pray for you too and hope that you won't be faced with making that choice for a good while.

Thinking of you both

Helen

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

Hi, Helen,

Don't you worry,  I'm nowhere near giving up yet - like you I feel far too well at present,  apart from post-chemo!

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 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

Hi John

I can't remember if you can take both anti sickness at the same time, they may work in different ways so I would suggest checking with the dr or nurse. Ondanstetron is known as the most powerful anti sickness med (if used to be exclusive for cancer patients because of the cost!) however like everything else take what works, so if you find the metclopromide works better ot a combo works better then sltick with it, its all trial and error i'm afraid!

So far the dex seems to be standard for all, the anti sickness seems to vary i get sent home with domperidone but then I've never had a problem with feeling sick so it hasn't needed to be changed! I think haze gets domperidone as well, so think Mary's ond and max are due to the problems she was having with sickness.

Hopefully she will feel better soon, though to be fair I think a long day out on saturday would have left any of us washed out the following day! I think thats one of the hardest things to accept, doing what we once could do without thinking now needs to have recovery time built in (diff makes you feel old )  you need to remember that chemo is accumalitive as well, so Mary will feel more and more tired and it can take several months after chemo ends before energy returns. Not saying you shouldn't get out and about, cos its brill that u do, just saying to expect a tired day after it!

Hope Mary has a good day today

Jackie xxx

Hi samkevin

So sorry to hear of your loss and especially the sad circumstances which have left you finding it difficult to come to terms with. The other have all given you some useful advice and the only thing I can think to add is the ethical side of it. Obviously we don't know your circumstances but information can be very difficult if you are not the next of kin. Hospital (in UK) are almost obsessive now with confidentiality, the patient gets told everything and with there permission others can be told. This does lead to the type of difficulties you seem to have experienced. At other times the next of kin is involved, it is then up to them what they pass on and again you have the old Chinese whispers getting in.

In direct response to your questions (my opinion only) 1) yes unless the patient has clearly indicated that do not want to know

2) doctor to patient preferably with relatives present for support 3) uk have protocols

I hope you manage to resolve these issues quickly so you can comes to terms with the loss of your sister and get to the point where you recover your good memories of her.

Wishing you the best

Jackie xx

Sorry for multi posting but memory playing up so had to do each individually!

Hi Jackie,

Thanks for your input re meds, like you say it's trial and error, maybe nothing will work and it just has to take it's course. You're right about the day out leaving her washed out. Mary felt nauseous all night and was completely exhausted today and ate nothing. She has her week off chemo next week so hopefully she'll have another run of feeling good before cycle 3 starts. She never felt this bad last time around with Carbo/Taxol so maybe it's the Gem that's dragging her down.

I was hoping to get her out to the Algarve for 2 or 3 nights mid April, but I think I will have to book flights the day before so we'll know if she feels well enough. Our planned family trip to Orlando in June is not looking good if she has to go the full 6 cycles of chemo, as you say the accumalative effect. I have found a company who will insure her provided she stops her treatment 2 weeks before we go, and they have a full medical questionaire completed by her onc, they have told me that the minimum premium would be £1000! So a lot to consider there. Mary developed neutropenic sepsis towards the end of her last chemo and I thought it was going to kill her, so there's no way I would take her to the USA without medical cover. The family have said they would not go unless we went too, because that was the whole point of the holiday - we all thought she was cured when we booked the flights!

Maybe tomorrow will be better, I hope everyone else is coping ok.

Best wishes,

John

x

edit: - PS, I meant to ask, has anyone tried self-acupressure for nausea? I was reading up about it this morning and it looks very interesting. If you Google "acupressure nausea" the most common pressure point seems to be on the back of the wrist. You can even buy travel sickness wristbands that work by pressing this pressure point (p6). Look at the reviews on amazon.

Message was edited by: JohnMillbrook

Hello, SamKevin,

I am so sorry to hear about your sister.  My thoughts are with you and your family.

As John and Jackie have said, protocol will differ if you are in US, so I would advise that as well as letting us know how you get on you also try to find a similar chat site in the US where the info will be more suitable for you.  I'm pretty sure there will be some, I stumbled across one myself a few weeks ago.

Good luck, love Hazel x

Hi, John,

So sorry for Mary - at the moment I'm feeling the same, and it's b..... awful!  Hope we BOTH feel better soon!

Love Hazel xxx

Hi John and Haze

beginning to look like I'm just lucky with the nausea and vomiting, which is a good job because i hate feeling sick, to the point I have avoided alcohol since being sick at the age of 17!!! John, get the bracelet, my view is its non invasive than therefore can do no harm and if it works great.

Haze do phone the team, you need to drink and they may be able to control it by different meds like they've tried with Mary.

John, the insurance, my god they do take us for a ride don't they! I find one of the main problems with this cancer thing is not being able to plan ahead. I think its something we are all really used to doing and it all adds to the uncertainty when we can't. Gem will certainly cause different effects to the carbo/tax, but I suspect that Mary still has this on board (its not that long she she had the carbo/tax is it?) so the gem is hitting her already battered system. I had my second lot of chemo 8 months after the first and found it far harder going than the first or so far the 3rd.

I was suprised when after 1 dose of carbo/dox my platelets fell, I had been chemo free for 18 months so didn't understand why they had dropped as previously it had only happened the once and not to the point where chemo was delayed. The onc said that chemo was accumulative and length of time between treatments made no difference

John have you looked at getting Mary on any of the trials? you have never mentioned any previous medical history so if the cancer is her 'only' disease process she may be suitable, my blood clots and location exclude me! not a lot of trial activity in the backwaters of Norfolk! if you think it might be suitable there are links on this site which tell you the trials available and what they are looking at.

Ginger is also supposed to be good for nausea, but Haze and Mary you both NEED to drink or you will feel even worse.

Stomach feels better today (still don't feel quite right but mild pain not severe) though I have to confess I'm reluctant to move around much in case it comes back! that's bad as I'm not normally a physiological type person but its so crippling when I get it I just can't help worrying it will come back.

Hope today is a better day for you all

Love Jackie xxx

Thanks, Jackie, you are so helpful!   I have forced myself to get up today and had a slice of dry toast and cup of tea - drunk VERY slowly.  So far it has stayed down,  but still don't feel quite out of the woods yet!

May try John's travel sickness bands when I can get out again.

Hope your stomach pains don't get too bad again!

Love, Hazel xxx