Symptoms all mixed up now : Hi everyone I feel in... - My Ovacome

My Ovacome

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Symptoms all mixed up now

Janet235
Janet235

Hi everyone

I feel in a mess and a muddle at the moment...

After the Rotterdam Regime which finished mid May ( which did give me some remission) my appetite gradually diminished until now I am scarcely able to eat a third of my normal intake. My energy levels have plummeted so most of my time is now spent on the sofa with consequent muscle mass loss. I went to get a couple of new jumpers from M and S a couple of days ( big outing!) ago as now really feeling the cold - I was really shocked at my reflection trying them on...!

I am taking some supplements daily mixed with Greek yoghurt/ kefir but they don't seem to be making any difference.

Alongside I have had ongoing diarrhoea problems, then a c. Diff infection in hospital ( now cured) but although I think I am getting over it some days, yesterday I had another uncontrollable bowel tsunami rush just as I was about to eat a small omelette after 2 looser sessions during the day. That was the end of any dinner! Still more is exiting than I am able to ingest.

Additionally ( oh yes, there's more ) I have had an Indwelling Pleural Catheter ( IPC) in for over a month now and we continue to drain about half a litre every other day. This leaves me uncomfortable around the chest area and with back ache for several hours and only a hot wheat wrap soothes.

My scan from 6 weeks ago showed return of disease and the doctor wanted to start cisplatin/ gemcitabine . I wasn't ready so decision was deferred until last appointment a week ago.

I still felt significantly wiped but now scared that the disease is beginning to return aggressively - my abdomen feels and looks swollen with various lumps and bumps and all the symptoms seem to blend blurily into anything difficult to pick out specifically.

I explained all this to the doctor ( kind, but difficult to understand at times and I feel not really deeply listening. ). I asked if another scan might give a better update picture or how significant the delay in starting treatment again might be , no definite answer on either. I do have links now to a community MacMillan nurse who checks up on me every couple of weeks.

I've been prescribed 2 mg daily of steroids ( which helped me greatly once before restore my strength and appetite) but no discernible difference yet , alongside omeparazole as I am now being occasionally sick and have acid reflux ( never had this before even all through my chemos..). I take slow release oxycodone twice daily but forgot last night and was in stomach cramping pain for many hours ... resorted to the fast acting liquid version in the small hours.

The thing is I wonder - have I reached a crossroads... and how I should respond on my next appointment on the 9 th October? I know it is all an unknown , no one knows how each one of us responds to the next chemo input but do worry if this will do me more harm than good... I know it will be another ' difficult' one to take. I am sure it will stop the pleural effusion and help with some of the more difficult symptoms , maybe even knock back the disease for awhile once again, but it's the aftermath I worry about

Feeling much more between a rock and a hard place than I have ever felt before... and wondering what I should do.

I know it's my body and my decision - my husband will support me any which way, he's been an absolute brick through these last few weeks, but your thoughts as ever are more than welcome...

Love and hugs out there to all those in good and difficult places

Janet x🌈❤️🤞🏻

28 Replies

Have they tried a pleurodesis to seal off the space in your chest?

Janet235
Janet235 in reply to ScardyCat40

They talked about talcing and I will broach this when I go back for a check up on this. Thanks for the flag up x

Oh my dear Janet. I feel so sad to read your post. It seems just a short time ago that you were ringing that bell and looking forward to some good times. Life sucks. Cancer sucks. I could swear shit loads for you - but I won't. I really don't have advice for you. We all make our own decisions in our own way and no-one has the right to tell you what to do. Only you know how much or how little you can take. One thing is for certain, the majority of us will be making the same decisions at some point. Tough as they may be.

The worst thing about it all is pain. I know I bang on about my treatment here but top of the list, I've noticed this last two weeks, is pain control. I was given a booklet on it. Their philosophy is NO PAIN. I don't have to beg for a spare paracetamol, I'm given what I need, sometimes before I know I need it. I know it makes my life easier to be pain free. Pain drags us down into the pits and makes it hard for us to think straight. Stupidly I was suffering the pain until it reached a 10 and I was crying. I got so told off and the decision for pain control was taken away from me p.d.q. After that I could function normally - well as near as normal as I can get. So please, if you can muster the energy, complain to whoever will listen and make them get you pain free. Then, other symptoms can be tackled. It sounds as if you are sinking into the abyss and you need us all to come round and drag you back.

Please don't give up just yet. Give yourself a little target to aim for - Halloween for instance. I know what you mean about looking in the mirror. We'll go out together for Halloween au naturelle and frighten the shit out of everyone.

In the meantime, I'm sending you all my love and will be thinking of you. Big hugs too. xxxxxxxxxx

Janet235
Janet235 in reply to Kryssy

In the night you are in that delusional state between waking and hoping you can just turn over and drift away to no pain land. Sometimes it's too much effort to wake yourself up properly and do something about it, but yes up to now pain has not been too much of an issue, but you are right- I need to be more proactive and not pretend it will go away.

Of course day is always better than night even though my stomach is so sore and tight today....

Yes we'd all make a frightening Halloween bunch, add in the no hair and crazy eyebrows that have forever lost any semblance of shape....

thanks, Janet x

Janet, I think your questions regarding an update scan and / or implications of delaying treatment deserve more than an indefinite answer. Maybe ring Ana here who is likely to be able give you pointers as to how to phrase your questions to get the answers and perhaps help with dealing with deflected answers?

I'm guessing now you're not starting the trial as there are a number of tests to complete. However, although I've only had two Cis / Gem so far, I'm feeling fine. Early days yet but I was never sick first line either, just had a couple of waves of nausea which could be sorted with ginger.

I wonder if your local pain control people can help sort out your current symptoms? From what I've read, the oncology department doesn't always seem the best suited to do that.

Take care!

Hi Janet - I am so sorry things are proving so difficult - we all know about rocks and hard places, don't we? I guess with any treatment there's the option to give it up if you are not comfortable or it's not working - you don't have to go the full course if it's not for you. I guess when things get tough I will want to be made comfortable in the best possible way, whether that's through chemo or through pain control/palliative care measures etc. That's my take on it, anyway. All the very best xxx

I will mention the trial next appointment but I did ask about trials and was told there weren't any for me at the moment ( weird, are they hiding stuff, have they enough 'recruits' , am I not suitable ?)

I will talk to my MacMillan nurse re deflected answers. I think the no additional scan is it that they don't like to do it within 2/3 months if possible plus it wouldn't make any difference at this stage and probably only scare... ( my rationalising anyway)

I realise there is a lot of stuff oncology don't seem to overly concern themselves with and yes good pain management is one of them..

Many thanks for tips...Janet x

My first trial and this one have scans every eight weeks so it can be done (I know there are risks with CT scans but these affect the healthy more, the risks are less significant for those with our diagnosis). The way you have rationalised it may be the correct one but you should be given a straight answer as to your suggestion regarding an update scan and information to help determine how significant a further delay in treatment might be until you feel stronger. It may be that the kind doctor doesn't really know but he can go and ask his superiors. Hope your consultation is better next week.

Harpist's point is really good, you can always decide to start the treatment and then stop if you think it's not the best choice.

Hope you get a good nights sleep!

Insist on morphine patches. I had them last year when I got sick. I changed it every 3 days and they were sublime. I couldn't have managed without them. At least our GP is good at one thing, giving us anything we ask for. He's pretty slow on other stuff - but useful. He didn't even know what a CA125 test was for. He admits he doesn't know much about cancer. He's just an appointment maker and giver out of medicines. No, not quite so bad. He did recognize shingles, although the dose he prescribed for me, two tabs a day, is way below what it should be. I'm getting six a day in hospital and at last the shingles has started to fade. Only 3 months later.

Yes, the middle of the night is the worst time. All the gremlins come at once. Why don't they like giving you a scan within 2/3 months? That doesn't make a heap of sense to me. You need to know what's going on inside of you. Worry is our enemy.

Wishing you all the best for some action soon. We don't have MacMillan nurses here, as far as I know, but I'm sure there is something similar. xxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

Janet235
Janet235 in reply to Kryssy

Liquid morphine I had once made me faint, I wonder if patches are slower release? That's why I was switched to oxycodone which is an opiate based alternative.

I'll keep that one on the back burner though x

I have found that it is more effective to go in and as about specific clinical trials rather than posing it as a general question. This is just a very rough initial search for trials for ovarian cancer in the United Kingdom. Not all are applicable and inclusions/exclusions need to be checked. You can do your own search refining it to look for solid tumours rather than ovarian cancer and likely will get additional trials.

clinicaltrials.gov/ct2/resu...

Janet235
Janet235 in reply to RonLitBer

Thanks for link, you are so much on the ball with this stuff...x

RonLitBer
RonLitBer in reply to Janet235

Spurred on by fear and desperation.

Hi Janet, I;m sorry you are having such a hard time we all do understand how you feel, I was told that my oncologist have no more options , I'm about to go for a second option in a couple of weeks , but like you my fatigue has been so bad and I've been trying to get my strength and appetite up.

My Gp has me on 5mg steroids one a day and I've been taking them now for 2 weeks and feel a bit better my appetite is also better.

Now I wonder is it worth going back on treatment and dealing with all the side effects and the fatigue again for a small result but we never know and there is always hope we live with.

I hope what ever decision you make give you the results you are hoping for ..Take care lots of love Lorraine xx

🤞🏻For both of us... hmm and maybe double dose of steroids... x

Aw lovely so sorry things are so rubbish for you right now xx

Maybe your fear of the chemo on offer comes from how hard the Rotterdam was for you (which You soldiered through) but this regime may be less harsh so as has been suggested, would it be worth trying one round and seeing how you are? Only you can make that decision based on how you feel xx

I’d ring and ask to be referred to the dietician at the Christie too and they can advise the best way to get calories into you and may offer you supplements to try x

I’m keeping everything crossed you turn that corner and start to feel better sweetie x

Please don’t be in pain though and try and get the pain team involved, pain free will make you think and feel differently too x

Lots of love

Bev xx

Janet235
Janet235 in reply to BeeWild

Yes I think you are right, to me it feels a mix of how hard that regime was and the legacy of symptoms which have been more complex and on going this time than any treatment I've had before... or the fact that it is harder for the body take multiple courses of chemo poison with not much remission time in between and the big one, what will it do me this time?

However I can but try maybe as suggested do a couple and see how I go on in the week off recovery time

What number are you up to now on the taxol? By about 2/3 rds of the way through this I was beginning to feel really good, hope you are too

Janet x

BeeWild
BeeWild in reply to Janet235

I know it’s so hard not having much time in between treatments to actually do some living!! I know you had a hard time and have not truly recovered from it before the beast is on the march again!

Hopefully you, your family and your team will come up with a solution that you can tolerate xx

I finished chemo having had number 18 on Monday and I’ve been feeling very tired the past few weeks so only managing part time at work now and don’t feel motivated to do anything but lie on the sofa most days! The cold cap has worked so I’ve managed to keep

my hair even if I do look like sideshow bob it’s so curly 😁

Keep that spirit up Janet even though it’s so difficult xx

Janet235
Janet235 in reply to BeeWild

Oh well done, funny I felt the opposite much more energised and ready to go...that lasted 2 months, but was good while it lasted...

Watch out for the curls... my last treatment gave me curly hair, then they all suddenly flew away

Still you might get hair remission with the cold cap.

Now I have one cm. baby silky straight hair growing again... please let it stay. I look like a pinhead at the moment as my head is not big! Honestly!

X

BeeWild
BeeWild in reply to Janet235

Lol I’m sure you don’t look like a pinhead!! You just need some weight on ya bones and some recovery time xx

When you next in clinic?

That's a tough place, Janet. If you are not comfortable trying the chemo on offer, and need better answers to your questions, would it help to consult a different oncologist?

Not trusting my onc was a really bad position to be in, for me. Changing hospital/onc just felt right at the time.

Hope you will be offered a suitable treatment and helpful answers (as much as possible at least) soon. xx. Maus

Janet235
Janet235 in reply to Maus123

There is quite a big team at C's and you never know who you are going to see, depends who's on the clinic rota that day it seems...

I am gathering my specific list of q's and enquiries for the next appointment a lot based on advice given here

THanks!

Maus123
Maus123 in reply to Janet235

Ah then it might be a question of being persistent and returning a few times, until you get to speak to the right person. Fingers crossed for you.

Aw sorry you’re having such a rough time Janet. Definitely number one priority to try and get on top of the pain and agree with Kryssy re patches - I have Fentanyl patches which I change every 3 days and then top-up oxocodone capsules or liquid when needed. Do you have a local hospice who can send out nurses to help with this if you are not getting best care at hospital?

Then you should be able to get a definite answer re whether to start or delay treatment, do you not have your own specific oncologist who you can ask to see? I know it’s so hard pushing for things when you are feeling rubbish, maybe get your hubby to ring for you?

I totally understand re appetite and bloating, I had a bowel obstruction 2 weeks ago and am now on liquids only, and can barely get half my daily calorie intake in. It’s so rubbish! I am now starting to have Ensure Plus milkshake drinks as these provide 225 calories each and have extra nutrients added in, you could ask about them.

Hope you get some answers and get more on top of pain soon so you feel better placed to decide what to do next. Love & hugs

Madeline. Xxx

No one's mentioned hospice yet and although I am now totally reassured about their role and help with cancer patients I still have this background reluctance to open up a conversation about this step and route.

Yes I have a named oncologist who is head of the team but he is not always there ( and tbh not much better ..). I find the younger women the best, they engage and listen and respond much better now I am thinking. Maybe I should just specify woman if I get HIM again..,

Two good tips re patches and drinks, haven't tried those before - just fortsip which goes down the drain!

Many thanks and hope you continue to strengthen

Janet x

I agree with Jess, hospice and pain control go hand in hand. Pain control to get you to better cope with the chemo. I’ve read there’s talk of changing the name hospice.

Hope you manage to eat well today

All the best!

Hi Janet,

You do sound like you are left a bit wandering and I can gather this is not in your comfort zone. Hospice could very much help you and potentially that option is there and waiting just not being met. Goog luck xxx

Dear Janet. So sorry you are going through this. After reading your post...especially toward the end...sounds to me that you already made up your mind that you will take the next chemo (if necessary) and kick it's ass! You already stated what the outcome will be which means you believe it. Don't give up!!! Stay strong and eat away! Sending you positive thoughts, good energy and a great big Cyber hug!

Marisa

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