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 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

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!

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

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

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

Hazel, try this - http://m.wikihow.com/Stop-Nausea-With-Acupressure

Thanks, John,

I did see your suggestion and had a look, and as I said to Jackie I will get the wrist bands when I get going again, and try them next time.  Haven't tried it with finger pressure yet, with my luck I'd probably press the wrong place and make something else go wrong!

Thanks again,

Love Hazel xxx

LOL@Hazel! ...and my work colleagues were saying "gonna share the joke then John?"

Mary was a little better today but still feels really washed out. I hope she is better tomorrow as it is our Pearl annniversary, wow! where did those 30 years go?? I have bought her a big bouquet of flowers and hid them in the garage, I'll leave them in the lounge before I go off to work in the morning. We'll go out to a nice restaurant if she's feeling up to it, otherwise we'll do whatever she wants.

I hope you feel better tomorrow too Hazel, thanks for cheering me up just when I needed it.

Best wishes,
John

x

Hi Jackie,

re chemo - Mary got about 8 months out of the carbo/taxol although they cut out a couple of taxol treatments at the end because of the neuropathy, the Prof said he didn't want to turn her into a cripple (not very pc, are you still aloud to say that?). I think she recovered really well apart from that and our social life was back to normal so most of the chemo must have been burnt off, so I'm surprised by what your onc said but he probably knows more about it than me

The other thing that I swear worked well for Mary last time around was the liquid iron formula, but she hates the stuff and doesn't want to take it this time even though I think it will give her a boost. I think it tastes ok personally but as they say, you can take a horse to water....  BTW she hates ginger too LOL!

Don't get me started on Mary's medical history, they have trouble carrying her file at the hospital LOL, but probably nothing that would effect her having a clinical trial. Let's just say that she has suffered from an extremely rare condition called Maffucci Syndrome since she was about 5, and has had a lot of ops over the years to manage it. I am convinced that it could have been the trigger for her cancer but nobody can confirm that. I may talk to Mary about clinical trials but she may become suspicious that I think her condition is worse than she believes it to be, difficult one.

Glad you're feeling more comfortable, long may it continue!

Best wishes,

John

x

Oh dear, John,

I haven't inadvertently said something rude, have I?   My partner has always said I make him laugh because I'm such an innocent and don't realise that what I'm saying can have other connotations!  (Though I did think as I was writing it that maybe it could be misconstrued, but hoped it wouldn't be!)

Anyway, glad it gave you a laugh!

Happy Pearl Anniversary today to you both - the flowers are a lovely idea, I bet Mary will be really chuffed  , I would be. Hope she will be well enough to go out this evening, but don't let her overdo it again like at the rugby!

I am feeling a bit better this morning, at the moment trying to get through the ginger tea as still a bit queasy - with luck should be OK by this afternoon like last time. Can't say that I like ginger much, either, same as Mary.

Love to both,

Hazel xxx

Hi all

Happy pearl to John n Mary, hope u manage to enjoy the day! See what you mean John re clinical trials, they tend to be arranged in cancer stages if that helps at all, I haven't look recently to see what's available but they recon that people in trails do better than others even if in the placebo group! don't quite get it but if it helps I'd do it!

Glad your beginning to feel better Haze, I don't like Ginger either lol can manage ginger nut biscuits but that's as far as it goes!

Hope we hear from Eileen soon and the long not posting is not due to her ending up in hospital again

take care

Jackie

xxx

Me again!

Had to look up Muffecci syndrome as I'd never heard of it and I couldn't have that! Interestingly found this ' Maffucci syndrome is associated with a higher risk of CNS, pancreatic and ovarian malignancies' so looks like you suspicions could be right (not that it helps)

Jackie