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 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 Helen

Some of the ladies here have had weekly chemo which seemed to work well for them, I'm surprised they haven't altered the chemo as NICE guidelines to recommend changing if you get less than 6 months 'remission', on the other hand I suppose it makes sense to try weekly while adding the Avastin and keep the others for use later. Some seem to follow the guidelines while others do there own thing!

The 'prognosis' conversation sounds reasonably to me, I think your consultant has handled it well. 3 years and 3 lots of chemo later my body is not telling me I've had enough!

Take care

Jackie xxx

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!