When you have multiple health problems that all contribute to how you are feeling how do you tackle them?
For example you are getting short of breath but you have pleural effusions. You also suffer reflux which causes catarrh at the back of your throat and cracked when you breath. You also have allergens which cause post nasal drip.
Where do you start?
I think the answer to this is ‘how long is a piece of string?!’ I have an under active thyroid and I’m fairly sure that it has contributed to getting OC, but I can’t prove it, and the NHS guidelines on thyroid treatment aren’t interested in full thyroid health, only looking at one aspect of it. I’ve gone round in circles trying to work out what to do for the best.
With all your symptoms connecting to each other, I can see you are in a bit of a pickle (true British understatement there!). Can you work on the allergens to tackle the nose, and solve one problem (or minimise it)? Maybe try to break it down into the individual components and address each in turn? Not sure just how you do that, but it’s a suggestion.
Vicki x
Thanks I think and pleural effusions and the acidic reflux are connected to the cancer. The ENT doc suggested being referred to a gastroenterologist to see if they can suggest some medications to get my reflux under better control.
My bowels can sometimes be a little sluggish so that means I get back up and can make the reflux worse
Hi there ...
I have problems with my bowels and stomach. Basically, without medication, they wouldn’t work except by gravity, and I’d quickly be in hospital. The disease has caused me to have lead pipe bowel meaning it’s stiff through calcium deposits left by the cancer, the cancer itself and through signal malfunction.
I have a regime given to me by the hospice doctor which I stick to. It’s not faultless but it’s meant I’ve been kept from having back up for four years which is when I saw her.
You’ve had pleural effusions from the start but you did say this latest episode is different. I hope your doctor is able to get to the bottom of it soon. Xx
I have recently been referred to the palliative care team and she has recommended that I take a small dose of docusate daily to keep me regular. I have been taking one a day so far and I have been going everyday but I still feel full
I have a Laxido powder in the morning, and then Bisacodyl and senna at night. Xx
They suggested starting off small. I have some movicol but I do find it can make me a bit loose so they suggested trying half a sachet. They also suggested using a pro kinetic like metacolpromide or domperidone. The first one gives me the jitters and the second one is the most effective antisickness and treatment for bloating I have ever used but a GP took me off it because of a government health warning
As you said, the Movicol can cause looseness and I go down to half occasionally.I’ve been caught short many times and had seconds to spare. I’ve also had a few accidents, luckily, at home. I tend to know now what days are a problem and make sure I know where the loo is and have some change handy. I know I couldn’t do without the regime and it’s kept me free of bowel blockages after having a series of them. The longer it’s in the intestine, the most likely it’ll dry up and become a problem somewhere. That’s my thinking. If I don’t go one day, I top up with Lactalose. Xx
I have been caught out a couple of times with accidents. It’s not very nice
I know .. xxx
This is so interesting. I wonder how many other ladies who have OC also have an underactive thyroid....my Mum has one and hearing your opinion on this will spur me on to do some digging. Have you any more information on this from your opinion/experience?
Hmm...not really. It’s a hunch I have. Given that your thyroid drives your metabolism, and cancer is being viewed more and more as a metabolic disease, I feel there must be a link. That and the fact that the NHS only uses TSH (thyroid stimulating hormone) to routinely monitor thyroid conditions, where there are a whole host of relevant (more relevant) thyroid markers to check as well, including T4 and T3.
Thyroxine is T4 only, and it should convert to T3, but for some people this conversion isn’t very effective. As far as I know, I have never had my T3 checked, but I bet my levels are deficient. I’ve asked my GP but she toes the official line. Now that I am being treated privately, I’m thinking of asking for the complete set of thyroid bloods to be taken. There’s a Health Unlocked Page for Thyroid UK, but those guys speak a whole different language that I don’t understand (and it scares me a bit!).
Somewhere here a lady from the States, whose name I've forgotten, but she posted here very recently with stats of Stage and CA-125 levels, posted sometime ago regarding thyroid problems and the link the medications may have to OC, or maybe it was the thyroid itself but think it was medications.
Rising to go out, but you should be able to find it.
Hi January-2016-UK, I will have a good search for that post because it seems to be a corner that the oncologists haven't covered yet
This is the title of the post and the lady's on-line name is Rppizio. I can't work out how to show a link although I think it's possible. However, if you use the Search facility you will definitely find the post with the title, it was ten months ago.
Ovarian Cancer & Thyroid related issues
All the best!
I know the NHS is cash-strapped so doctors have to follow the protocol but this just seems wrong that they only do one test when other countries test T3 and go from there regarding treatment. Haha! If the ovarian forum is anything to go by (aka being the nicest forum in the world!) I am sure the Thyroid UK forum will be just as nice! 
I'm going to have a gander at it and get befuddled! I will let you know if I find out anything because what you have said re. metabolism really does make sense.
Hi a couple of months post treatment I was diagnosed with hyperthyroidism, I am now on anti thyroid drugs Carbimazol and they have made a difference. My T3 & T4 are back to normal now but TSH is extremely low at 0.01 and has been like this for over a year.
Ellsey xx
May I ask, are you in the States (or not in the UK)? Because it seems that the NHS doesn't want to test for anything other than TSH
Hi I am in 🇬🇧 I had severe muscle pain palpitations and very hyper, my GP done all three T3 T4 and TSH. I am now under local hospital. I have also had pituitary test and bone density scan. I have to take Carbimazol anti thyroid meds and also Vit D and calcium.
Ellsey xx
....maybe ask your cancer nurse but also think about the alternative treatments that appeal to you best...even those you might enjoy if that's possible...and try to link them in with conventional treatments as much as you can.....how do you feel about planning for a really nice, self indulgent whatever the expense Christmas too. It is so difficult this time of the year...not much help probably but the best I can think of. Love Chris x
I don’t really have a cancer nurse. I do have a trial nurse and she is aware of all my problems as is my oncologist
I find it very difficult to get different specialists to talk to each other but you as the patient are the only person who can tell what should be tackled and in which order. I do think talking it through with CNS or Macmillan person might help you to decide how best to ask them to help you...from what you've said all these different things are getting on top of you.
Hope all these wretched symptoms get sorted soon xx L
I do feel a bit overwhelmed at the moment but I don’t have a CNS or a MacMillan nurse
I must admit that’s one thing I really miss is CNS as she was always my first port of call. I often wonder if I’m doing the right thing and when to ring and who to ring. When had cns didn’t think twice about ringing.
Hi Sharon,
I have been getting short of breath recently and I was tempted to ring the pleural team but just not sure if it’s the pleural effusions or allergies or reflux. In reality it’s probably a combination of all three.
Sorry you have so much discomfort. Lots of good advice above, also wonder if you have considered complementary therapies just to help with overall sense of wellbeing? Maybe there is something available at the hospital where you are treated?
Hope you soon feel.more comfortable
X
I could go to my local hospice’s drop in. It’s every Wednesday I might not be able to make tomorrow as I have a CT scan
I think I need to find out a bit more about services at hospice. I’m between two one in Chester and other in Wrexham. My friend went into Chester and her family said they were brilliant. I used to work next door to it and we often did bits of fundraising at work. I’ll have to find out if need revering.
They often have day services and you can self refer
Hi, I suggest you use Neil Med rinses for your nasal issues and perhaps a spray such as dymista to help too, About reflux it is a minefield, for the most, I just use gaviscon or Maalox or if bad Zantac. I have been prescribed Nexium but it actually stopped me passing water, Maybe try Mint tea for reflux too, it does settle the tummy, I would contact your gp about the breathlessness, it is better to safe
Thanks Suzuki I am on two omephrazole a day and take gaviscon after meals. I also have a sea salt spray for my nose and avamys nasal spray. I cough a lot when I bend over and feel breathy. I know this can be caused by reflux irritating the back of the throat. I also have pleural effusions and I am already under the respiratory clinic for their management
I’m thinking, also from reading some of your replies, that a day visit to your local hospice could well be the answer. They will be used to dealing with a number of different conditions and will more likely be in a position to see the overall picture of your current problems.
Did you used to have a CNS before you went into the trial? She should now be your current CNS.
All the best!
I used to see my oncologist at another hospital but I have moved from that area. I have hardly slept my tummy has been so uncomfortable
Being unable to sleep is very debilating, both for physical recovery and mental fortitude. Try and get a visit in to your local hospice. See if on your new hospital on-line pages there is a phone number or email for PALS. They should be able to put you in touch with the CNS nurses for oncology. Or your oncologists PA should be able to.
Take care now!
Helen
The pallative care consultant I saw last week comes from my local hospice and she gave me a leaflet
Did they give you an appointment, how do you take it further. I read that lots of ladies have had good help managing all their symptoms.
They have a drop in on a Wednesday and I said I would contact them myself. However today I have a CT scan and next Wednesday I am in clinic
Do try and fit it in either before or after the scan today. You can’t go another week without much sleep.
Or better still, maybe phone the hospice or contact the palliative care oncologist and ask for an appointment.
Good luck!
Hi,
It is very difficult to deal with something big like cancer when you have already got other problems. My lovely Dr Onc believes that my MS and Lymes could be why I had such a severe reaction to my first (and last) Taxol. I also have a small hernia at the base of my oesophagus which can cause terrible reflux. Maybe this was the reason I had a severe reaction to my first (and last) Taxotere. I also have a brain tumour which, thankfully, hasn't grown or turned nasty in 5 years. Maybe this is the reason I'm a bit dippy...... Anyway, what I'm trying to say is that the body reacts differently for all of us. For the reflux, I never eat late in the evening and find going to bed slightly hungry keeps the reflux away. Since chemo I have to be careful of acidic foods hitting the stomach before other milder food has gone in first. Just eating an orange on an empty stomach brings on a burning pain. I have a glass of grapefruit juice most days as, believe it or not, it reduces the acid in the stomach and soothes things down a bit. A glass of wine is another matter. It has to be taken on top of lots of food and then just a sip to test. Most of the time I just leave it alone.
Have you been checked for a hernia? It can cause reflux, chesty coughs similar to pleurisy, breathlessness and phlegm in the throat. Got a friend who was treated for pleurisy and acid reflux for 18 months on and off before they realised it was a hernia which was enormous and almost filling her chest cavity. Had an op and she's fine now. It was when you said that if you bend down you get a reaction. Sounded familiar.
I get nose problems because I have an ulcer sitting up in the bridge of my right nostril. Had it years and need to get it cauterized. It's never given me any problems except for the odd spontaneous sneeze or blocks the nostril a bit but since chemo it bleeds all the time so some time next year I'll get it sorted.
Bloody nora - I'm a mess!!! When I write all my ailments down it's a wonder I'm still here at all.
I hope you start to feel better soon and the girls here have given you some good advise.
Kryssy xx
Thanks for your response Krystal the reflux started at the same time as my cancer diagnosis and I believe it to be one of my symptoms. Aside from the heartburn I also get some of the silent symptoms like the cough which often gets worse on bending. The crackling at the back of my throat might be caused by the reflux as well. Sometimes I wake up during the night gasping for air and feeling like I am drowning and I often have the taste of bile at the back of my throat.
Thank you for your advice regarding not eating before bedtime. This is something I am trying to do. Sadly the last few nights I have not slept very well because the upper might of my abdomen has been sore. I have felt very full and uncomfortable and it’s been very grim to the touch. This also makes breathing difficult
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