Chemotherapy Maintenance : I have now... - The Roy Castle Lu...

The Roy Castle Lung Cancer Foundation

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Chemotherapy Maintenance

Ollie13 profile image

I have now just started chemotherapy maintenance with Pemetrexed. Hopefully the side effects won't be as bad as the combination I've just finished. Still on the Prednisolone for the inflammation of my right lung due to Radiotherapy side effects. On a reducing scale now but stopped for a couple of days to take the Dexamethasone. Back to the Prednisolone now . Omg these steroids might help but the weight I'm piling on 😪. Any ideas to curb the need to constantly eat !!!

So I've been told you stay on maintenance chemotherapy until "C" rears its ugly head again so 🤞.

I have noticed the weight gain face also red but no other side effects as yet.

So we carry on I'm so happy things are going in the right direction but still have a niggle in the back of my head I'm sure some of you understand that although I'll never be cured it will be managed.

25 Replies

Hope all goes wellOllie wish I could put weight on best luck to you Good hear some good news xxx

Hi Ollie,,hope you're ok and feeling positive. I'm glad you're treating is continuing to go well, like me, we know it's not curable but it's definitely very treatable. We have to believe that don't we or we have no hope. I'm the same Ollie, eating everything in sight, I'm not bothered though! Been looking on here every day, it's been so quiet of late, just hope everyone ok. Sending love and best wishes. Pam 🥰

Hi Ollie you are going through so much, just want to say l’m thinking about you, you are so strong and positive. I hope this next treatment isn’t as ruthless as the last for you ❤️

Ollie13 profile image
Ollie13 in reply to Zac2018

Hi Tara what can one do but carry on life is so precious and I try never to take it forgranted. How are you and where are you at with treatment etc. This can be a real roller coaster ride bumpy at times but we plough forward somehow xx🤗 Janet

Start maintenance pemetrexed on Thursday. Feeling so fatigued after radiotherapy and gamma knife. We seem to be on similar path xx

Ollie13 profile image
Ollie13 in reply to Betty68

Hi Betty sorry to hear you're so tired inly advise is go with the flow when you're not tired do things then rest when needed or it will drag you down. Just had the 1st maintenance Pemetrexed and 3rd day in feel under the weather can't put my finger on it 🤔. I'm reducing the prednisolone hopefully I'll stop eating 😆 as much. Hope your treatment stays on track I've never been on a roller coaster like this 🙄 let's keep in touch of developments xxxJanet

Betty68 profile image
Betty68 in reply to Ollie13

No chemo. Platelets too low x

Ollie13 profile image
Ollie13 in reply to Betty68

O dear Betty do they not give you folic tablets did they say what might be the cause. Not sure if this will help but leafy greens and fish. Hope they sort it out soon xxx

Ollie13 profile image
Ollie13 in reply to Betty68

Hi Betty how has your 1st week on maintenance been any side effects. I've had a terrible 1st week 😪 xx

Betty68 profile image
Betty68 in reply to Ollie13

No chemo. Platelets too low. Blood test again Monday fingers crossed. Sorry to hear you’ve been rough. X

Hi JanetGreat to hear from you and hear things are moving in the right direction.

I know a few people who have maintenance chemo and have been doing so for many years. A good friend of mine is now 5 years in on it and she gets on really well.

Fingers crossed you'll soon be off the steroids.

Best, Sarah x

Ollie13 profile image
Ollie13 in reply to sassassas

Thanks sassassass that's quite encouraging 😊 xx

Hi Ollie - it’s great you can have Chemo while on Prednisone, I didn’t know that, I’ve been on Prednisone for over a year now! And I have the 4 stone to show for it. But I figure it’s one of those things. It will go down. Easier said than done but try and stick to fruit for the sweet cravings. Also foryour face I will try and add a photo. I found these super helpful, plus a heavy foundation to stop looking like I had rosea.

Good luck to you xx

Face wash, face cream, Jade roller

Hi thanks for that yes the prednisolone was for inflammation of the lung when it started to get better they put me on maintenance but as you know you have to come off it on a decreasing scale. Been on it before and everytime I pile on the weight. Also with the Dexamethasone 😒 I love fruit but it doesn't satisfy my cravings 😕 but my daughter says "better to be fat and healthy than skinny and ill " 🤣🤣🤣 take care xxxJanet

I agree with your daughter ... x

I know everyone’s case is different but I’ll tell you mine in case it helps. I had lung cancer which went to my brain and then (once those were all sorted) went to my liver with 12 tumours. I was put on Permetrexed every 3 weeks and finished 14 months of it back in May when amazingly my scan was clear. My scans are still clear and I have no medication. So fingers crossed this continues! I found Permetrexed ok. Yes it sapped my energy and the steroids always gave me what I called my slump days which was about 3 days after treatment when I slumped for about 3-4 days. I never needed to take to my bed. Only thing I did get was cellulitis in my foot and lower leg because I let the skin dry out. So I really recommend keeping your feet moisturised. Best of luck with your treatment.

Ollie13 profile image
Ollie13 in reply to Vapcq

Hi thank you for your support it brightens the day and thanks for writing your story down it helps people on the same path ❤ I hope you continue to stay well and enjoy your life xxxJanet

Hang on in there - the steroids are a lifesaver but with the side effects you mention - my weight has fluctuated no end - I gained weight after my lobectomy due to inactivity (used to swim several times a week 130 lengths a time) and sort of came to terms with it just grateful to be alive but chest infection with steroid treatment added to the weight but a year later despite returning to swimming (albeit building it up gradually from the March to December) was around 13stone 7lbs. I started swimming more regularly but also had another chest infection and started losing weight for which I was thankful. however it came off and off - 6 stones in total despite more steroids - many investigations later (over a year of tests) and the conclusion was the steroids had been stopped too soon and sent my adrenal glands into some sort of disorder... I went down to 8stone.... in Jan 2019 hospitalised again with a respiratory infection and given IV steroids and oral and remained very breathless for 6 months before changing inhalers again... over time that's improved but the weight gain (and more from lockdown) not shifted so I'm back to over 14 stone again! with a wardrobe varying from size 20 to 8, I just get on with things still grateful for every day.... things I found that curbed the ability to eat were to do things that made it difficult - like painting my nails (didn't want to smudge them), swimming, gardening - getting absorbed in any hobby where your mind is off eating/food...the other issue for me was being unable to sleep which meant the 'munchies' went on through the night. hope you find a way soon... good luck...

Ollie13 profile image
Ollie13 in reply to JanetteR57

Hi Janette I had a little giggle reading this I'm sure we've all got a range of sizes in the wardrobe But your right as long as we are here and coping life is so precious and I'm grateful also to be here.🤗 take care and thanks for sharing it does help xxxJanet

JanetteR57 profile image
JanetteR57 in reply to Ollie13

I remember when I had to increase my swimming costume size when I returned to swimming after surgery (then 14st 6lbs) . Two women coaching one another (clearly serious swimmers) in the pool commented on my swimming style that I was 'wasting energy' with my strokes. My response? 'I'm just glad to be alive. I'm not swimming for any competition but for my own lung fitness and survival...' I sometimes chuckle at that memory as my first swim post surgery was end March 2011 when the surgeon had said I could return so lifted my gym membership suspension. Apart from a swim the day before surgery and night of surgery in December, I hadn't swum since mid Oct and as he said, the muscles they'd cut through had shortened due to lack of use and would be painful... I remember not being able to lift my arm for front crawl or backstroke but determined to carry on when I discovered this I decided lying on my back sculling my arms at my side and kicking my legs was still better than nothing!! keep smiling...

sassassas profile image
sassassas in reply to JanetteR57

What a great story Janette and a brilliant reminder never to judge other people until you understand what is going on for them!

Hi Janet it's a rollercoaster of a ride physically and mentally. I really hope you don't get any more side effects from the treatment. Keep strong and keep pushing ahead. I wish you a magical Christmas with your family and pray we get good news for our health in 2022 xx Be

Ollie13 profile image
Ollie13 in reply to Bebe55

🥰🥰🥰🥰

Hi, I'm feeling a little worried and anxious. My friend had a lumpectomy 2 weeks ago and the lymph nodes were removed from her armpit. Is it normal that the armpit area feels like there is a lump there?

I do feel as such when I read what so many go through. I takes so much courage, but I suppose I would do the same. We get through some how dont we? There are a few trusted sources that I have used and can be useful for you- try mayoclinic.org , cancer.net, and ankr.us.

Ollie13 profile image
Ollie13 in reply to chinvi

Thanks chinvi hopefully someone on here can give you some reassurance xx

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