Just a quick update I have been on the LOGS trial since February 2017 I had my second CT scan last week and the results were very encouraging shrinkage in all the sites they are monitoring and either stability or shrinkage in the ones they are not. I still have pleural effusions but they remain small.
I am still having issues with my breathing and have been waking up in the night gasping for air. There is lots of mucous at the back of my throat and oncologist has suggested post nasal drip but has not suggested anything that would help. I have been to my GP a couple of times and they thought maybe acute bronchitis or asthma. I was prescribed an inhaler but not given much advice on how or when to use it.
I have to have regular echocardiograms whilst I am on the trial as damage to the heart is one of the potential side effects so I haven't been prescribed my next cycle until after my next echo which is on Monday. Then I have to go back next Wednesday to see the oncologist.
I did get a bit tearful in clinic because I felt like no one believed me but the nurse rang me yesterday just as I was coming through the door of my flat and I was really out of breath from walking up the stairs so I felt a little vindicated.
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ScardyCat40
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Thanks for your reply that is how I have been using it but its not made any difference. I think it was prescribed on the basis of 'lets see if this helps' I have not had any lung function tests
If it's not made any difference I would say it's not asthma usually it makes a slight difference even if it's severe I'd go back to the GP and say it's not working I want to be sent for tests! Xxx
What tests? I have already had chest X-ray, chest CT and I am having an echocardiogram on Monday. I will go back to the GP just not sure whether to wait until after the results of the echocardiogram
I'm a pro with inhaelers, asthma and shortness of breath. For the inhalers: You want to exhale first, then take a deep breath while puffing so the inhaeler gets inside. Hold your breath for a sec and try to breath in a bit more. Then wait a few breaths and do your second one. Some inhaelers you won't feel anything but they do get some meds in the lungs. Others are more immediate, but takes a few minutes.
A few more tricks-
Steam helps clear the airways. Either turn on shower max hot, close door to bathroom and sit in there for a bit with the steam. Or, they sell little steamers that you put on counter and stick your face in and just breath for a few minutes. My husband uses one when he gets bad cold.
For sleeping: get a wedge 🧀 shaped pillow form and stick your sleeping pillow on top. It will help a lot to have your head and chest in that slightly elevated position. Takes a bit of getting used to. Especially if you don't typically sleep on your back. But its a huge help. I used on one for many months.
Lastly, when you do find yourself out of breath, be sure to stand up straight and put your shoulders back. This helps open up airways. Slouching over is more natural but hinders the airways.
To be diagnosed with asthma you tend to have a series of symptoms. Usually the salbutamol (blue) inhaler is prescribed first with instructions on how to use. Dosage of 2 puffs up to a maximum of 4 times a day. If you need this regularly then a steroid inhaler is added to be used regularly to prevent symptoms with the blue inhaler topping up if required.
I like to follow your progress because I'm also low grade so much thanks for your continued posts.
I can empathise with the breathing issues I had asthma since childhood and when I had difficulty breathing they diagnosed poorly controlled asthma when in fact it was a plural effusion but looking back the feeling was quiet different. Asthma is more of a chest tightening and I found I was gulping for air and my lung wasn't working, it's difficult to explain. Anyway breathing improved after drain.
Since diagnosis I have changed my diet and eliminated dairy, gluten and processed sugar and as a side effect I no longer have asthma. I have never needed to use my inhaler since. We are very quick to treat the symptoms without looking at the cause. I have since come across other people who's asthmas improved when dairy has been removed. I see a shiatsu specialist through a local cancer charity and he's qualified in Chinese medicine and I was telling him about the dairy asthma thing and he said in Chinese medicine dairy is linked to phelm/mucus in the body and if he had a patient that was showing too much phelm one of the first things he would recommend would be to eliminate dairy.
I truly hope you find a solution
Kind regards
Michelle
Ps it is important to be shown how to use them properly, some GP practices have specialist asthma nurses I would ask for an appointment with them if they have one.
Ok thanks for the replies but I don't actually have a asthma diagnosis I was just prescribed an inhaler to 'see if it helped'. I was shown how to use the inhaler at the pharmacy and also given a spacer. I just haven't noticed any difference
You can ask to be prescribed a peak flow metre to help you measure whether or not you are getting any improvement. If you are using a blue inhaler you should measure your peak flow before using it and again 15 to 20 minutes after using it. If you are using a brown or pink inhaler, measure your peak flow in the morning and in the evening for several days to see if there is any improvement. Keep a written record so that they can see what's happening. Blue inhalers should make a difference straight away; brown inhalers may take a couple of weeks and you may need the dose adjusted. If you are sensitive to ethanol ask to try Flixotide rather than any of the beclomethazone inhalers, as they all contain ethanol, so won't help you. (I found this out the hard way when Becotide went cfc-free. Beclomethazone is not stable with the new propellant unless ethanol is added. Your doctor may well not know this - my GP sent me to a pharmacist to sort it out!)
It was the pharmacist that showed me how to use the inhaler and gave me a spacer. I have booked an appointment to go back to the GP but its not for a couple of weeks. If it gets worse I will have to ring up on the morning to see if I can be seen that day
Well that's great news about the CT scan results Lorraine!! 😃. Just not so good about the breathing issues and pleural effusions. It must be worrying and frustrating for you and it doesn't seen like your support team are supporting you much! I'm sorry I can't offer any advice apart from to keep telling them, as once you get that side of things sorted you can properly celebrate the good news regarding the effects of the trial!! Sending hugs. Xxx
Well I suppose if its not caused by the cancer or the treatment then its not their concern. My oncologist said he wasn't worried which he meant to reassure me but I just burst into tears
I agree with Zenaj. Great news about the shrinkage but crappy about your breathing and inhalers, must be frightening. Hope you get it sorted.
Good luck and best wishes.
Hello - fairly new to site, have been watching and if I was honest I too feel a bit of a scardy cat ..... But, I really have enjoyed all the positivity of the posts.
Like you I have low grade serous peritoneal (Ovarian family) diagnosed 2010 on Letrozole 2 years (worked well reduced many small tumours) then had small intestine blockage, (2013) surgery to bypass and gained an ileostomy - stoma (amazing step forward) - followed by 4 rounds of carboplatin which worked well. 2015/16 tumour under stoma grew so 6 round of Carboplatin + which did not do the trick. This year surgery to try remove large tumour, but too risky. Now going through process to see if I can go onto the LOGS trial.
So being able to follow your journey, which popped up this morning is quite amazing. Huge thank you for sharing, most certainly has lifted some of my anxiety. Early days, with base biopsy still to be done and as you mentioned heart and eye tests. So I am in 'the waiting game' travelling up for Clinic now each week. God willing all the boxes will get ticked!
Yes, it's been a long but very positive journey - have learnt so very much about me and being alive and staying positive. 😊
Generally I have found the the side effects a lot more manageable than being on chemotherapy. I am having my routine heart scan this afternoon. Which centre are you at?
Hi Lorraine - sometimes I wonder, always seems to be one thing after another, sent to try and try us the do. Keep telling myself all part of the journey, just wish I could pack a bag and head for sunshine ... so gona make do with enjoying the garden and a couple of warm days, before starting my new Monday Clinic regime.
Have to say ALL my treatment and support down here has been amazing.
Can I ask is yours part of the Ovarian type? I had a total hysterectomy when I was 38 (now reaching 70) no histology in those days !! Hence being diagnosed primary peritoneal.
Seeing your photo and your smile makes me realise I must declare my 'mug'
At first they though I had PPC when I was first seen in Winchester in 2011. I decided to come back to Manchester then had to go through the whole diagnosis process again. I was eventually diagnosed with stage I've low grade serous ovarian cancer at age 41. The cells on the surface of the ovary have the same origin as those lining the peritoneum so they are treated the same
Hi Sue - going to crash in on Lorraine's post as I was glad to read your reply. I'm another low grader and have just had 6 x Carbo which didn't work so glad I'm not the only one! It was a hard 'pill' to swallow. My question is did you have no treatment after the carbo until the surgery? I am now in weekly Taxol ... All best Nicola
Hi Suzie - let us know how you get on. I was first treated at the Marsden Fulham Rd, now live in France but I have been back to the Marsden (Susan Banerjee) to get a 2nd opinion. Its a long way from Poole up to Sutton but I'm sure you were happy to have been referred there. All best - Nicola
Sutton site so not too bad. Yes also Suzanna Banergee. Weekly Clinic starts this Monday. It's a 2 hour run, good if we have a late app like this next one.
We have a Motorhome and have located a site at Redhill - we think we will (if early app) make it a long weekend! We also recently acquired a puppy - now 5 months so are incorporating him in the fun.
Where about are you in France? We have had many happy jaunts in various vans through France and Spain. Just hoping fingers crossed things will settle down again. But if not there's loads in the UK.
Lovely to hear from you, it's quite an amazing site, always hesitant it was Nichole's scardy cat that resonated with me.
Hi Suzie - I am in Provence and I have treatment in Avignon but now also go to Montpelier for 2nd opinion as there is a more specialist oncologist there. But low grade rare and I always feel they don't quite know what to do with me. I envy you seeing Susan Banerjee, I think she is very, very good. But treatment here good I have to say, and also many options available, and it is just part of our lives now, but sometimes hard to live with. I find this site invaluable.
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