Very worried about the future
Hi all
I hope you are keeping as well as you can.
I have had some difficult news to deal with this week when I received a diagnosis of locally advanced prostate cancer. It was a shock as we were investigating possible chronic prostatitis but unfortunately the worst outcome that could have happened.. has happened.
I have many upcoming appointments with oncology and once I’ve decided which treatment route to take I will begin on what I imagine will be a very long road to recovery.
Unfortunately I had another shock today in my rheumatology specialist nurse appointment. They have stopped my weekly Enbrel injection because anti-TNF agents cannot be taken whilst there is evidence of cancer in the body.
This is a real blow and I can just imagine how I’m going to feel in several weeks or months time.
I have been off my Enbrel for 3 weeks because of a throat infection that I was taking antibiotics for and I can already feel my arthritis worsening and can see the psoriasis returning.
Has anybody else had to come off their biological treatment?
If so, how did it go?
I have been told I can receive periodic steroid injections to act as a sort of “arthritis first aid” and if or once I get the all clear from oncology they can put me straight back on my Enbrel injection.
At the moment I feel very lost, dazed and confused and I don’t know which way to turn. I’m trying to stay positive and taking each day as it comes but it’s getting harder all the time.
I have a full body bone scan on Monday, to see if the cancer had spread, then the discussion about treatment begins in earnest.
Hopefully all will go well and I can get through the next couple of years still with a smile on my face.
It has certainly made me appreciate and understand what exactly is truly important in life … love, laughter, compassion, empathy and understanding.
Trying to enjoy the small things and not worry about anything out of my control.
Stay well everyone 😊
Best wishes
Greg.
I can't even beginning to imagine what you are going through right now,
. My heart aches for you. Many of our members have had to stop biologics for cancer treatment. I hope some of them see this and respond here. It's not always easy, but there are alternative approaches that can help. Some have had success with elimination diets or anti-inflammatory diets, but those can be hard to stick with when you are dealing with both PsA and the side effects of chemo. Meditation, even for just a few minutes a day, can help you manage your stress and prevent symptoms from worsening. Water therapy might soothe your joints and help with range of motion. It might also be helpful to talk to both your rheumatologist and oncologist about medications that can at least treat the symptoms of your PsA or relieve pain while you are undergoing cancer treatment. That would be a good list to have on hand, especially for over-the-counter medications. Please know we are here for you as you go through treatment and please keep us posted whenever you feel up to it. I will be thinking of you. Sending lots and lots and lots of healing vibes your way. - Lori (Team Member) thank you for your kind words and wishes Lori. They are really appreciated 😀
I am not being offered chemotherapy, I have to decide on whether to go for removal surgery or radiotherapy and hormonal treatment. Each come with their own risks and side effects so at the moment I am researching, talking to others who have had the same cancer (on another forum), reading and asking questions.
It’s such a difficult and life changing decision to make that I feel a little overwhelmed at the moment but many assure me that I can and will find a way through this.
I suppose I’m still in the shock phase at the moment.
I was just discussing anti-inflammatory diets today as it happens. I do eat reasonably well and I did go gluten and dairy free for quite some time. Both have crept back into my diet to some extent so I think I will reverse that from now and look into other ways to try and control my PsA whilst I try and get through the coming months.
I think one of the things I’m most worried about is the psoriasis returning worse than it was. I went some 20+ years hiding myself away from people because of the self imposed embarrassment over how it looked. I’m sure when the time comes and I’m in the middle of cancer treatment that will be the last thing on my mind but it’s strange how our minds can attempt to catastrophise things … or mine does anyway. I’ll just give it a good shake and a kick up the behind. Hehe.
It would be great to hear other people’s experiences on coming off biologicals for cancer treatment and then going back in them. I am interested to know if they work just as well the second time round.
I was really down after rheumatology told me I had to come off it this morning as Enbrel has been a real saviour to me over the past 7 years or so.
Thanks again Lori and take care
Greg 😊I’m sorry to hear about your diagnosis. I went through breast cancer back in 2006. Six months prior I had been diagnosed with diabetes. During cancer treatment, which consisted of surgery, chemotherapy, radiation and oral chemotherapy for five years. Not going to lie, it was not fun. Chemo gave me heart failure and cardiomyopathy. I also got MRSA in my port. That nearly killed me. I have developed so many illnesses since I was diagnosed with CRPS, Complex Regional Pain Syndrome. Now PsA. Just take it day at a time. Sometimes a minute at a time. Know that I am thinking of you, and praying for you. Good luck. Sorry to hear about all your illness Shortyswife and I hope you are surviving through them as best you can.
You’re right, it’s definitely no fun having so many things go wrong at once is it. The health service in the UK is on its knees at the moment too so getting an appointment for anything other than cancer is extremely difficult. This is nothing against the wonderful staff that work there but a build up of many other problems over the years (under investment, lack of staff, poor salaries, pressure of covid and more).
It certainly is a battle getting from day to day at the moment.
I hope you stay as well as you can.
Take good care
Best wishes
Greg.
Hi @Greg. You definitely have a lot on your plate. So sorry to hear about the cancer diagnosis. I do have a friend that just went on chemo. She said it has done wonders in clearing her psoriasis which is crazy to me. She really hasn't commented on how it is affecting her psoriatic arthritis. I will ask her and get back to you on it. You are also welcome to post your question on our Facebook page where I know our community members will have some answers for you. Please keep us updated on how you are doing if you want to. Vickie W., Team Member
Hi
thank you for your kind words. Funny you mention the chemotherapy doing wonders, that’s what my rheumatology nurse said, it’ll calm everything down. That’s how methotrexate started to be used for psoriasis and PsA wasn’t it, I’m sure I read someone was prescribed it for cancer and as a side effect they discovered it cleared up their psoriatic problems too. It’s no longer used for cancer as far as I know.
I don’t really use Facebook too much but thank you very much for your offer of help.
Take care
GregActually @Greg it is applicable to you cause they accept international messages so you can get in touch with them. Hope this helps. Vickie W., Team Member
thank you Vickie, I will check it out then. Very much appreciated.
Take care, Greg
