Hoping for some advice

[yellowtulip55]

My husband has been living with NSCLC for two years now. He has fared quite well but unfortunately when he was taking Keytruda immunotherapy he developed pneumonitis and had to stop the treatment. He was then given steriods (for the inflammation of the lungs) and has not had any cancer treatment for a year now - apart from scans and blood tests. He remained stable. Sadly now the tumour in the lung has grown very slightly and he has been offered chemotherapy. The drugs he will be given are alimata and carboplatin by drip every three weeks. These drugs seem to carry so many unpleasant side effects and I worry that he will become weakened by this treatment. Can anyone advise - or perhaps has had the same or similar treatment. We would be very grateful for any information right now as he is at the point of deciding whether to go ahead with chemotherapy or to just carry on at this time with scans and blood samples. The doctor has told my husband that the treatment has a 50/50 chance of shrinking the tumour (they are not able to operate or put him back on immunotherapy due to the pneumonitis). Thank you so much to anyone out there who might be able to give their views or advice.

[magstherunner]

Hello YellowTulip55My experience time is shorter. I was diagnosed with NSCLC in May 2020 at the age of 67, previously healthy, never smoked, very fit, a runner and social worker working part time. Non operable, I was started on Keytruda with combination chemo of Carboplatin and Pemetrexed every 3 weeks. That first round - well it was not a great experience - I was very sick and very constipated (!) requiring injection and - hmmm, enema! However, it turned out that the chemo nurse had not given me the correct advice re the anti sickness medication and when I took those before and after the chemo and was prescribed Movicol for the other, I fared much better subsequently. I have now got into a routine as to how to manage the meds. After 4 rounds of the combination chemo and immunotherapy, the Carboplatin was discontinued as planned and I have carried on since with the Keytruda and Pemetrexed. I have had a couple of chemos dropped because my kidneys were not functioning as they should - showed up on blood tests, but this has been reinstated when the kidneys recovered. Additionally, after losing about 10lb in weight, I have gained most of it back and eat really well. After feeling a bit off, lower appetite and really tired for the few days following treatment, I feel generally well, doing most things as before (sadly, except running, although I walk at least 3 miles most days and have a jog/walk when feeling up to it). My scans have not shown shrinkage but not growth either. I am due a scan this month but it looks like it won't happen because of Covid. I have not worked for some time as I find that I wouldn't have the brain space to do my job as I'd wish to and I have now decided to retire (which I wouldn't have done had it not been for the cancer). My lung nurse gave me good advice and said to be kind to myself which I try to do whilst making sure I do all the things I am able to.

My advice, based on my experience, would be to give it a try. It is worth a bit of discomfort to give yourself a chance. If it becomes too much (and I realise I've probably been very lucky) then decide on what to do next. The very best of luck, these are the most trying of times to be seriously ill. Try to keep positive and appreciate the little things. I think it is sometimes much harder for the non sick person to stay positive and I am so lucky to be married to Mr Optimism himself! Big best wishes. Magsx

[yellowtulip55 in reply to magstherunner]

Thank you so much for the reply Mags. You are right-being a patient in these times is very difficult. You sound very positive and married to a lovely man. I am worried how my husband will fare under the chemo. He had to stop the keytruda treatment because of pneumonitis. He is still considering the chemo (it’s due to begin next week). Your advice is much appreciated and I think ‘be kind to yourself’ as a patient is very good advice too. I wish you all good things and a big hug to you and your husband. I hope too that in the not too distant future you are able to run again. Thank you again for your helpful and kind reply. Sheila x

[simlut]

My dad just turned 71 and has had Emphysema for over 20 years and atrial fibrillation for 4.5 years. He was diagnosed with stage 4 Squamous Cell Carcinoma NSCLC in September and has had 4 cycles of chemotherapy Carboplatin and Paclitaxel with immunotherapy Pembrolizumab (Keytruda) and thankfully he had no nausea, vomiting or noticeable fatigue.He had constipation but took 2-3 sachets of Laxido a day to get over that. He has had some neuropathy in his fingers and toes and feet. He has lost his lovely thick head of hair so he wears a cap when we go to the hospital to keep his head warm.

No one knows how it’s going to affect you unfortunately but my dad thankfully got through it with minimal side effects.

His tumours have shrunk so now he will have just immunotherapy every 3 weeks until the tumours grow again.

Sending prayers for your husband xxx

[yellowtulip55 in reply to simlut]

Thank you so much for your reply Simlut. I am so pleased to read that your dad is doing so well-the tumours have shrunk. You sound a wonderful support to him too. We had such high hopes for my husband when he was having the keytruda treatment but unfortunately he had to stop due to pneumonitis and now the only option for him is chemotherapy. He is due to start the chemo next week. We have to remain hopeful and positive and as Mags (who kindly replied to my post) said - he must treat himself kindly during this stressful time. I wish you and your dad all the very best and so good to know he is doing well. Thank you. Sheila x

[simlut in reply to yellowtulip55]

Thank you Sheila. Ask about your husband having Filgrastim injections after the chemotherapy to keep his white blood cell level up. I asked the Oncologist if my dad could have them and he said yes.

Get in plenty of gentle laxatives like Laxido to take. My dad also takes an antacid Lansoprazole and an antihistamine with Loratadine in like Claritin.

Wishing lots of luck to your husband xxx

[JanetteR57]

It's so hard for loved ones as well as patients as we try to protect those we care for - what does he want to do? if he's prepared to give it a go, as others have said, there are medications to counter any side effects he may experience - not everyone has the same impact as it depends on other fitness/conditions (not necessarily age related) but hopefully if you ask the oncologist or specialist nurse and share your concerns, they can also help explain what would happen if...... hope this helps. roycastle.org/about-lung-ca...

[Stanley14]

Can't offer any advice but to say good luck.

[BellaBe]

I’m sure you’ve heard this before but people really do respond differently to the extreme. I had Cisplatin and Venerolbine and I had a really bad reaction to it feeling like I was being poisoned, it was awful. I was 44 when I had that treatment and my oncologist knew of patients 70+ who just breezed through the same treatment.I think it must be worth a try as treatment can always be stopped or changed if problems occur.

Unfortunately after forcing myself through 4 rounds my cancer returned, although I’m lucky that I have a gene mutation that responds to a targeted therapy which I have now been on for 2 years.

I wish your husband all the luck in the world and would say to him that he needs to do what he feels is right not what he thinks others want him to do. Xx

[Lita04]

Hello Yellowtulip55. I was diagnosed with NSCLC with mutation Exon 19 March 13, 2012. I am coming up on 9 years of survival! I am still in active treatment taking Alimta every 6 weeks & doing extremely well. I did have radiation therapy to stop the constant cough& shrink the tumor (which it did) & then started the cisplatin & Alimta cocktail, after the oral chemo I was on quit working. The cocktail of cisplatin & Alimta was very hard for me, but the doses were limited and then I continued with the Alimta. After awhile I became NED & took a “chemo holiday” which lasted 16 months. The cancer came back & I resumed the Alimta, after the cisplatin/Alimta cocktail. The Alimta continues to “do its job” & I am so grateful! This has been my experience. Blessings & wisdom as you make this decision together. Janet

[Bow-19 in reply to Lita04]

Congratulations on nine years that’s great x

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Dear Yellowtulip55There have been some wonderful and encouraging responses to your post.

This must be such a difficult time for you and your husband as you may feel you are having to face it all over again with starting another treatment.

It is a personal decision on accepting treatment and only your husband can decide on what he wants as you both discuss the pros and cons.

As you know and as everyone has said, everyone does respond differently to any medication. Most side effects occur after the first few doses and you will be advised that any new or worsening symptoms to let the chemotherapy team know so they can be addressed early.

This link from Cancer Research UK details Alimta with Carboplatin and the potential side effects and how these can be manged: cancerresearchuk.org/about-...

If you would like to discuss anything you can either email us at [e-mail] or call our free phone nurse led helpline number on 0800 358 7200

Kind regards

The Roy Castle Support Team