Cancer treatment with Rheumatoid Arthritis

Hi Joolsg I am sorry you have this agonising wait to hear what treatment you will have, I know how difficult this is for you. 
There are so many cancer treatments now, it is impossible to try and gauge which one you may be offered. Hopefully you will not have to wait too much longer before you hear from your oncology team. 
My thoughts are with you at this stressful time. 

Good Morning Chelle

Thanks for replying, as daft as it sounds I’ve not been stressing all the time as I’m in denial mode a lot and I seem to cope better that way. It means I can carry on being as normal as possible. I’m trying not to let myself go to the darker places but sometimes you just can’t help it can you. I know I’ll feel better once I know what they’re going to do. I was just hoping to find someone out there that is in a similar situation as I know having RA makes treating my cancer more complicated, there’s certain things that can’t be used as my immune system is already not doing its job. I’m sure I’ll hear soon but then I’ll have to put my big girl pants on and face up to it again. I hope you are doing ok, take care 

Of course, sorry as I don’t have RA myself I didn’t think about the effects of immunotherapy on this. Every day is a day of learning. 
Hopefully someone with experience of this will be along to share their story soon. 

Evening Jools

I was diagnosed with NCSCLC grade4 in September and was only giving about 3 weeks as I was very poorly,I’ve had RA since 2015 done various treatments including methotrexate but now fairly settled on biological drug Amgenvita,after being told at first I wasn’t fit enough for treatment I dragged myself up out off my weakest hour and 2 weeks later went back for appointment and they couldn’t belie the difference in me,now I’m on my 6 chemotherapy treatment and doing well,scans done last week went well with tumour shrinking considerably and flakes nearly all disappeared ,I’ve been fine so faro keep fighting positive vibes all round Robert

Hi Robert

Thanks for the reply, I’m sorry to hear of your earlier diagnoses of prostate cancer as well as your lung cancer diagnoses in September (I read your profile). I’m sorry to her you were so poorly and I’ve glad you’ve found the strength to fight it. I found out on Friday that I too have NSCLC, adenocarcinoma, I knew where it was  and where it had spread to but have only just found out which type. I also know I have lymphangitis which is an extra hurdle to get over.

I was diagnosed with RA when I was 33, that’s 30 years ago, I also have fibromyalgia amongst other things. I’ve been on Methotrexate for over 25 years. It keeps me in good remission most of the time but I’ve had to have surgeries along the way. I now know that depending on what treatment they give me I might have to come off it and frankly I’d be glad to as I’ve read that long term use of methotrexate as well as having RA makes the risk of getting lung cancer higher and I’m worried it may be feeding it. I admit I did used to smoke but we’re talking over 15 years ago although I know this will have contributed to my diagnoses too. I must admit I’m worried about having to come off methotrexate because having a flare up of my RA and fibromyalgia is the last thing I need as well as having to fight off this cancer which I fully intend to do but I’m willing to give any other RA treatment a go at this point. I’m apparently still a couple of weeks off seeing an oncologist, I’m scared of chemotherapy but I’ll take whatever they throw at me if it gives me time. Im seeing my thoracic consultant again tomorrow so he’ll be able to fill in a few more blanks. I’m so glad to hear your treatment is going well and you’re able to withstand it. It gives me hope because I’ve been so worried about it all. I hope it continues to go well for you and I’m sending positive vibes right back at you, take care…Jools 

I’m on Lorlatinib an ahinibator which I take in tablet form and I’m almost certain they’d put you on another drug for your RA,it’s a big shock to the system when you’re getting told it’s Grade 4 cancer,but then survival instinct kicks in and you look at the bigger picture that there’s a lot they can do now with treatment’s, Robert

Hi Robert 

Am I right in thinking that  Lorlatinib is one of the targeted therapy drugs ? How are you coping with it ? Have you had many side effects as I’ve read that the targeted therapy drugs can cause side effects almost as bad as chemotherapy. I know it makes no difference really as I’d take whatever they give me, I’m just interested to know how you’re getting on with it. I’ve still not heard from oncology but a had a second thoracic consultant appointment last week and they said that I’d hear this week and if I hadn’t heard by mid week I should ring the lung nurses. Best wishes, Jools

Hi Jools

Yes their the targeted drugs,I’ve not had any side effects really just a bit tired sometimes but apart from that nothing really,hopefully you’ll hear shortly from your team as there’s nothing more worrying than having to wait Robert

Hi Robert

How is your treatment going, good I hope and still not too many side effects.

Here’s a quick update of where I’m at, it’s been a busy old few weeks.

I finally saw my oncologist for the first time this week, to be fair I haven’t been kept hanging, I’ve had two thoracic consultant appointments and lung nurse appointments and they’ve all been great. 

I had had some extra blood tests a few weeks ago to determine which mutation my cancer gene is and the results came back that it is the EGFR gene, obvs different to yours and it also makes me eligible for targeted therapy.

So now my treatment is decided at last, I will be having Osimertinib which is an oral treatment too, it is specifically designed to target the EGFR gene with the intention of shrinking my tumours on my lungs and spine and killing as many cancer cells as possible and slowing the growth. This is exactly what I was hoping for as the success rate for longer survival with this drug for people with stage 4 metastatic NSCLC like me is really very good. Its in four weekly cycles  and I also have to have a four weekly injection called Denosumab which is a targeted drug for secondary lung cancer that’s in my spine and these together will hopefully buy me some time, maybe even a few years if I can withstand the side effects. They won’t be as bad as chemotherapy hopefully and I won’t lose my hair which is a bonus. It’s not for everyone though so I’m praying I’ll be ok on it.

I start treatment on 15th March as I have to have another up to date CT scan tomorrow and lots of other appointments before I start.

I’m very happy with the decisions they’ve made, I feel so much more positive and it’s given me at least some hope.

The oncologist says that most of my Rheumatoid drugs will be ok with my treatment but I’m still not happy about taking methotrexate now although the oncologist assured me that it’s not feeding my cancer.
They have been liaising with Rheumatology about this and I’m seeing them next week to see what they think would be best. The last thing I need is a massive RA flare up, I’m sure you can relate, we’ve got enough on our plates already haven't we.

Anyway, let me know how you’re doing Robert, sending positive vibes, Jools

Afternoon Jools I’m on the same type off therapy except I’m on Lorinlinib and it’s considerably shrunk my tumour and a lot off the metestatics flakes in 6 months,I’m actually sitting in A+ E waiting to get another scan as my bodies starting to swell up since a day ago and they think it’s fluid or the tumour pressing on the lung Robert