Chemotherapy with Etoposide and Cisplatin

[rareoldme]

Has anyone on here had Chemo with these 2 drugs? Just wondering how you’re getting on in feeling normal? I’m 5 years post chemo and my entire body hurts from head to foot. Doctor is looking at possible Lupus but ANA test is negative. I have joint pain, muscle pain, basically pain anywhere and everywhere. I’m wondering if it could be lasting damage from the chemo or should I have fully recovered from that? I did have mild joint pain before but nothing like this.

It would be interesting to hear from anyone who has had this treatment to see how they are.

[Trickysite]

could this be Ehlers Danlos Syndrome? It is genetic and comes in various grades. I have it in a mild form.

[rareoldme in reply to Trickysite]

I don’t think so. I don’t have flexible joints or stretchy fragile skin which is what I read about that. I’m more tense and stiff and struggle to move rather than being flexible. What I’ve read makes it sound easy to move and I definitely don’t feel like that. Moving is hard and painful. Even sat still I can be in pain and the slightest movement can cause pain to shoot through a certain area, back or ankle.

Thanks for your reply though.

[Trickysite in reply to rareoldme]

It is dificult to diagnose and most GPs cant. You need a specialist to diagnose it.

[rareoldme in reply to Trickysite]

I’ll see what my doctor says when I go back for the ten thousandth time 🤦🏻‍♀️ Lucas was thought but ANA negative. I know it can be but doctor likely won’t see it that way. All other things point to Lupus apart from ANA.

[Trickysite]

ask to see rheumatologist or I can suggest Ehlers Danlos Specialist Consultant

[rareoldme in reply to Trickysite]

hopefully my doctor will be doing a rheumatologist referral on Monday. Unless he’s like all the rest and sends me home telling me it’s all in my head

[Trickysite in reply to rareoldme]

For 25 years I was told my muscle spasm problems all over my body were all in my head. I went to many specialists, inc. rheumatologists, until I finally found Prof. Rodney Grahame at UCLH, London, who in ten minutes diagnosed me with EDS. That was 20 years ago, and he was the only one specialising in EDS. As I say, best to go to an EDS specialist who can rule you in or out.

[rareoldme in reply to Trickysite]

I think I have muscle spasms. Sharp pain at certain places in my back, ankle and sometimes knees. Sometimes makes me almost fall over when it’s my ankles. I don’t even have to be doing anything for it to happen. The tiniest move can cause it and it’s like someone stuck a knife in me. Does this sound familiar? My knees were so bad once I had to buy and use my own crutches for 3 months.

[Trickysite]

EDS is very variable in its presentation. One reason why it is hard to diagnose. You need an EDS specialist consultant to do that.

[rareoldme in reply to Trickysite]

In my experience doctors don’t like being told anything. We aren’t allowed to know things and ask for things. It has to be like before the internet where they tell us what’s wrong but the problem is they don’t know and give up telling us in its our head so we have to push for ourselves to be taken seriously which is exhausting and upsetting mentally and physically.

From some who has ED thinking I make have it, that says a lot so thank you for your suggestion

[Trickysite in reply to rareoldme]

doctors want to help but often find not knowing the answer difficult and end up saying it is in your head. Medicine does not know the answer to everything as the human body is very complicated! One has to deal diplomatically with doctors but under the NHS you are entitled to a second opinion. Say you want to see an EDS specialist not just a rheumatologist. You can always see a rheumatologist later.