Good News and Bad News

[Ollie13]

Saw my oncologist the other day good news the Radiotherapy worked and killed the cancer in my central chest. Bad news cancer has spread to other lymph nodes in my right collar bone left lung area and several lymph nodes in my abdomen. I am absolutely gutted didn't expect that. So going forward on 5th August I'm starting chemotherapy Pemetrexed and Carboplatin. Every 3 weeks for 4 sessions then reassessment has anyone had this combination and I would appreciate some advice. Also having Folic acid and B12 injections.

This has absolutely floored me I'm not sure especially after the horrendous side effects from Radiotherapy what to expect. Any words of comfort will be grateful.

[Manninmaid]

I am so sorry you have this worry. I have adenocarcinoma with bone mets. Following radiotherapy I had the treatment being proposed for you. I had nine cycles in total. The first few weren’t too bad but more latterly I was very poorly with recurrent chemo related sepsis. However the treatment did make a positive difference and after I stopped it I had a year of just denosumab injections to help protect my bones before there was further disease progression. I had more radiotherapy and am now receiving pembrolizumab immunotherapy and so far it has kept my disease stable. I hope carboplatin and pemetrexed are tolerated ok and make a positive difference for you too. May be worth asking about immunotherapy as an option for the future as well. Sending good wishes and positive thoughts. x

[Ollie13 in reply to Manninmaid]

Hi Manninmaid thanks for getting back to me and for the information hope you are well at the moment. I had Pembrolizumab in 2018 for 10 months then stopped because of immunotherapy colitis. However it had done its job. But as you may know you are only allowed to have it once, yes strange but the rules. Thanks again. x

[Manninmaid in reply to Ollie13]

You are welcome. Sorry to hear immunotherapy caused colitis but glad it also did its job. I have been lucky so far on immunotherapy as although it hasn’t reduced my disease it has kept it stable. Have a scan this week and guess I don’t need to tell you about ‘scanxiety’! I hope all goes well with your chemo. x

[purpleorchid123 in reply to Manninmaid]

Good luck... sending positive vibes further you x

[Manninmaid in reply to purpleorchid123]

Thank you so much! x

[Ollie13 in reply to Manninmaid]

Omg tell me about scanxiety I uaually have to wait 2 weeks and its well you know 😒 hope you get good results. I always ' prepare for the worst and hope for the best'. Let me know how it goes please 🤞 x

[Manninmaid in reply to Ollie13]

I do exactly the same. Yes I will let you know how it goes. Just another thought from when I was on chemo, I found ondansetron was the most effective treatment for nausea, if you encounter it. Hoping you sail through it though. x

[Manninmaid in reply to Ollie13]

Hello Ollie13. As promised just letting you know how I have got on this week. Amazingly my disease is still stable. So have had no further disease progression since November 2017. Please let me know how your first chemo goes. Hope it and indeed the subsequent cycles go well. x

[Ollie13 in reply to Manninmaid]

Morning what great news to hear I bet your so pleased 😀 I am truly happy for you stay safe and will let you know bloods and Covid test 3rd Chemotherapy 5th. x

[Manninmaid in reply to Ollie13]

Thank you. Really hope all goes well. x

[Red58]

Hi I'm on same treatment side effects I have thrush in mouth very tierd I'm go for neck head stomach and pelvis scan tomorrow so don't know how that go I'm sure you will be fine with treatment vitb Jag is every 9weeks let us know how you get on good luckxxxx

[Ollie13 in reply to Red58]

Hi Red58 thanks and good luck with your scan 🤞 let us know how it goes x

[Goingcuckoo]

Hi, my husband had Carboplatin and Pemetrexed, the full 6 cycles. He suffered quite a bit with his first hit, with terrible sickness but they sorted out anti emetics before and during his following cycles. He was given a mix of aperitent and metoclopramide. Plus he took ondansetron whenever he felt icky. This treatment helped shrink his cancer. That was a year ago. He's now back on carboplatin and gemcitibine and that is shrinking the tumours too. Other than sick feeling, loss of and horrible taste, mouth ulcers and tiredness he coped quite well. We found it helped to keep a diary of how he felt each day which enabled us to plan things according to how he'd feel during each cycle.Hope you find things aren't too bad for you.

[Ollie13 in reply to Goingcuckoo]

Hi Goingcuckoo great idea re diary thank you so much. Hope your husband is doing well. x

[sassassas]

Dear Ollie13 My husband was diagnosed in March with stage 4 NSCLC. He had 4 rounds of paclitaxel and carboplatin (+ two immunos). Its a rocky road but it did an amazing job knocking some huge tumours right back. I just wanted to share with you that for him, the chemo (and I know its not the same regime you're to have and everyone responds differently) wasn't anything like as bad as we feared.

My top tips: keep a diary so you have some idea what's coming up as you go through each cycle, take the anti-sickness tabs as instructed even if you don't feel sick (and if they don't work well enough, change them), make sure your diet is super healthy before you start and of course during treatment (especially eating fibre so you are not constipated anytime), drink more water than you can imagine around chemo day (to help avoid the constipation!), try and see the dentist before you start, and look after your emotional health too

On our shopping list was mouth ulcer cream & corsodyl mouth wash (worked brilliantly to prevent any big issues with ulcers), aveeno body wash and moisturiser (to prevent any skin issues - may not be an issue for you), prune juice & all bran (constipation!), paracetamol (bone pain from the pegfilgrastim injection to prevent low white blood cell counts - you may not have this but may be worth asking about), decaf coffee (for those days with the steroid). My husband choses to stay away from alcohol in the main, only to help him get the best sleep he can.

I'm not on this journey myself but supporting my husband has given me enormous respect for all of you going through it. It's a rocky road but it can be a long one.

Best wishes to you.

Sarah x

[Ollie13 in reply to sassassas]

Sarah thank you do much for all the information I will take it all on board when needed. Your doing a super job supporting your husband I'm wishing you both well. I totally agree this can be a long road with one thing after another.

Take care

Janet x

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Hi Ollie13

So very sorry to hear about the spread of your cancer, and understandable that you must feel quite devastated.

There have been some great replies and support from the forum and good to know that you are not alone in this.

This link from Cancer Research UK provides some information on the combination therapy that you will be starting: cancerresearchuk.org/about-...

If there is anything you would like to discuss you can either email us at [e-mail] or call our free phone nurse led helpline number on 0800 358 7200 Monday to Thursday 0900-1700 and Friday 0900-1600

All the very best

The Roy Castle Support Team

[Billcul]

Hi Ollie

I'm afraid that my cancer treatment was so long ago (2000), I'm sure radiotherapy like everything else, has changed and improved greatly. All I can say is, that even so long ago, I can remember the good that it did for me. It wasn't painful and it didn't make me ill. At worst. I recall it giving me some indigestion! I know folk who have refused the treatment, for reasons best known to themselves. However, if I am unfortunate enough to get the dreaded disease again, and am offered radiotherapy. I'd certainly go for it. I had twenty sessions!

Best wishes,

Bill