I was diagnosed Oct 19 with Stage 4 Lung Cancer (non-small cell) with bone mets (thigh & spine).
Was a complete bolt out of the blue as only went to GP with niggly pain in my back which then opened Pandora’s Box!
Had 5 days of Radiotherapy on my right thigh bone (showed 72% chance of fracture) and then started chemotherapy in Mid-November (Cisplatin / Pemetrexed) and Denosumab injections to strengthen my bones.
Had 5th chemo cycle last week, last one planned early March. Latest CT scan showed some shrinkage in tumours and bone calcification which is positive.
Have really struggled with fatigue / tiredness and complete loss of appetite due to nothing tasting right / nice. Also, my hearing has been affected and everything is a bit muffled.
I guess I’m looking to hear from anyone who has had similar treatment and what happens after chemo? I feel like I’ve spent the months since diagnosis just trying to get through the treatment and not really thought about what next.
Do Energy levels improve and does your taste return? Am not expecting miracles but any tips / advice or sharing of experience would be really appreciated 😊
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Wilbocarty1
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My husband has the same diagnosis as you though hasn't had radiotherapy
The chemo shrunk his tumours. He had 6 lots of chemo carboatin and pemetrexed every three weeks from May last year and then maintenance chemo of pemetrexed until December. It was stopped as the chemo weakened his kidneys. Now we're just watch and wait with three monthly scans. He suffered the side effects of sickness, constant salty taste and tiredness and fatigue throughout, though the tiredness was more pronounced for the first week after a 'hit'. He's now feeling more normal. He has the feeling of nausea now and then, not caused by anything specific for which he'll take ondansetron or metaclopramide and sometimes he`ll come over tired and have a little nap. Other than that he's back to his pre-chemo self.
Hope you feel more 'normal' once you finish your chemo. Has your oncologist suggested maintenance chemo?
Thanks Goingcuckoo. Agree the tiredness ‘hits’ the week after chemo and then gradually improves - just in time for the next one to knock you for 6!
Yes, oncologist is planning for Pemetrexed as maintenance chemo plus continuation of the bone strengthening injections.
Current Cisplatin chemo session is 8 hours long due to amount of IV fluid that’s needed in between the actual chemo so looking forward to that being cut down.
I’ll settle for 50% normal as everything is in slow motion at the mo! 😁
hi Wilbocarty1, sorry to hear about your diagnosis, I had similar but not the same, I lost all taste for water during chemo but my tastes did come back, I've just had radiotherapy on my head, and my appite is definitely back, I stuck to as bland food as possible, and I went vegan, good luck with this and wishing you and your family all the best for the future 😊👍❤👊
Has he been checked for markers such as ALK1 or EGFR etc, if not ask it might be possible he can get immunotherapy treatment after the chemo. There are quite a few available if he has been tested positive for any of these.
Hello! Firstly I wanted to say well done with everything you have been through in the last few months, I can imagine your devastation on diagnosis as something similar happened to me in November 2018. I have had a variety of treatment, immunotherapy, some surgery, radiotherapy and currently chemotherapy IV every 3 weeks and oral targetted therapy tablets twice daily. Latest scan showed shrinkage at all sites. With respect to fatigue don’t over commit yourself, I usually plan 1 thing a day eg meeting friends for coffee, have rests when you need them but also try a little exercise if you can. You might benefit from spending time with a physiotherapist who can help you specifically (we are all different!!)
Exercise definitely makes me feel better. The Macmillan website has lots of info on fatigue and also eating well.
Foods definitely taste different and not so good, I try to think of food as part of my treatment and do my best to eat well, even if it does taste like wet cardboard!! 😊 On days that it just won’t go down I make a milkshake with added protein powder (you can buy plant or dairy based at the supermarket) and add fruit and veg. Have you spoken to a dietitian? They will help you and offer lots of tips .,your oncology team can refer you. I had a gap of 2 weeks between different chemo treatments and my taste buds returned, everything tasted wonderful 😀.
I also noticed changes in my hearing, I would speak to your doctor or lung cancer nurses about this
Thanks Archersgirl - lots of great tips! Sounds like you’re doing well - long may it continue!
I have been really cautious about going out and about too much during the chemo - firstly have felt too tired much of the time but also keen to avoid picking up any other illnesses / infections. Am looking forward to finishing last cycle in early March and starting to plan some things.
Have lost quite a lot of weight and also strength in my legs so physio could be a good idea. Given my bone lesions have to be a bit careful but am sure some light exercise would make me feel better. I do have a Complan Shake every day with breakfast as found they helped with nausea when I couldn’t face much else. I never realised how much I enjoyed food until it all started tasting bad.
Have mentioned the hearing changes to my medical team so they are aware. Have been using Otex ear drops in case there’s wax build up. Will mention it again though if it doesn’t start improving.
It may be worthwhile asking to speak to the dietitian at the hospital or the chemotherapy team. The tiredness will take time to settle down and your energy levels pick up again, everyone is different. Rest when you need to and when you can, eat foods that fuel you e.g bananas, sweet potato to name a few and protein rich foods, eggs, nuts and seeds. Try small portions frequently may help.
If you wish to discuss anything you can either email us at lungcancerhelp@roycastle.org or you can call our freephone nurse led helpline number on 0800 358 7200
Hi I have stage 3b NSCLC I had four Rounds of cistplatin and vinoralbine with immune boost injections, anti sickness and laxatives plus steroids and antibiotics every round .
I got Pneumonia that’s how I found out after an X-ray the. Further tests I was 48 then and diagnosed in Dec2018.
My taste has got better but my appetite has not so I eat what I fancy at the time. Water smelt horrible and I’m still off beef and veggies but can manage fruit. My ears constantly ring or muffled. I get a lot of pain where the radio has been also but with part of the lung gone is no surprise so I just control with pain killers x
I’ve still got a lot of fatigue with small bouts of I can do everything. That’s 9 months after.
The radio has taken the top right hand lobe so I get really breathless pretty quick.
My advice eat what you fancy try not to lose weight, do what you can when you can if your tired rest of you feel better one day then get out in the garden and fresh air I found that helped as I was getting down.
hi firstly - so sorry to hear about your diagnosis - i also referred to the day i found out as Pandora box moment. I too have stage IV with liver and bone mets
I agree with your comments Chemo cycles are exhausting physically and mentally. I found during this time i developed strange food cravings (not unlike being pregnant) Mango especially was one- dried, fresh, juice etc..... The metal based chemos play havoc with your tastes its quite individual what tastes 'right' I found that the blander the food the better anything with any spice even pepper tasted bitter or extremely hot. Baked potatoes and cheese on toast became firm favourites. Once your metal based chemo is finished and you go on maintance your taste buds will recover.
As for fatigue - I kept a basic log of my symptoms so that if someone asked me out or wanted to visit i could look up what i was like on day 4 after chemo on a prior cycle - and whether that was a good day or not. It is hard to keep a 'normal' life but is important to try otherwise your life becomes only hospital related and the only people you socialize with are very sick people which is ok and supportive but you need balance.
does your local hospital have any collaborations with gym or alternative relaxing therapies. I have joined a gym and do 5 mins on bike (very low levels - i need a shopping basket on the front whilst everyone around on very high levels) and 5 mins on treadmill walking - i will aim to build this up if possible. Get the ok from your medical team first. Another connection is with a local alternative therapy - Reiki (wasn't for me) reflexology, acupuncture (too many needles) and more importantly for me counselling - half this battle is with your mind especially if your diagnosis was unexpected - I felt the doctors could patch up my body but it was up to me to support my mind - otherwise you cant enjoy the life that you have. I am trying to think of this phase of my life as a different chapter and try and fill my time with things that make me happy - family, flowers, dancing, singing (badly) I also joined a pop choir (good for breathing ) i never had any inclination to do this before and am surprised how uplifting and happy it makes you.
I am on monthly xgeva injections to support my bones - together with prescribed calcium tablets' The Roy Castle Lung Cancer Foundation has some great supportive/informative material for both yourself and your family plus a nurse helpline if you need it.
I am not sure whether you have been tested for EGFR or AK1 etc - they could not do a tissue biopsy for me so a liquid biopsy was ordered - which showed an EGFR mutation so I am now on targeted oral medication (a whole different set of side effects) so we all have different experiences as we go on this rollercoaster ride.
Good luck on your 'journey' dear fellow lung warrior
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