worry about the future with stage 4 cancer and RLS and ILMD

[Ruffabug]

I have been following this website for about nine months and wanting to give up Ropinerole but have put off doing it as I have been undergoing treatment for cancer I.e. surgery and radiotherapy. I thought once that was over I would be able to get an appointment with a London clinic to support me through reducing it. However I have now been diagnosed with stage four as it has spread to my liver. Surgery for this is not possible so I am going to have an aggressive chemotherapy starting in January. So I feel my chance of giving up Ropinerole (4mg a day) has gone. Now I am really concerned that the chemo drugs will affect the Ropinerole detrimentally. Also what about my end of life? I have been told I have 2 years at most if I can tolerate the chemo. If I don’t have chemo, 6-9 months. Also if I end up in a coma, or unable to take the tablets orally, what will happen? I know they are only available in tablet form and not in anything that can be give intravenously. I am 77 by the way. I am not afraid of dying , only of being in agony with ILMD. Does anyone have any advice?

[Hidden]

Hi Ruffabug, in my experience with hospitals and healthcare settings, the surgeons, doctors, nurses are loathe to change or withhold any medication that is on your chart. I’ve seen more instances where patients have refused their medications and were then asked to leave the hospital. I’ve NEVER seen an instance where a prescribed medication is withheld. Most any drug that is oral also comes in an intravenous form. Of course there’s also the Neupro patch which is quite convenient and doesn’t require swallowing.

Lastly, here’s something you might want to discuss with your Oncologist: europeanpharmaceuticalrevie...

[Ruffabug in reply to Hidden]

Thank you very much for your reply to my post. No I didn’t think they would withhold the Ropinerole, just that it might interact badly with the chemo and be less effective. And that I may not be able to take it y mouth towards the end. Reading other posts on this thread, I am somewhat comforted that perhaps other drugs such as Cocodamol and morphine based drugs such a tramadol might be substituted. I have researched finding an intravenous version of Ropinerole and cannot find any. Thank you too for the link. I did have breast cancer this year but actually the metastasis in my liver originates from the sarcoma that I had two years ago. This was a retroperitoneal lieyosarcoma on my kidney which meant I had a nephrectomy. I have had biopsies done to detect which cancer it came from. Many thanks again.

[ChrisColumbus]

While the British National Formulary states that Ropinirole "forms available from special-order manufacturers include: oral suspension, oral solution" they then only list tablet forms. And other sources only refer to tablets. Hopefully someone here will have some useful advice/information.

Meanwhile, all best wishes for your treatment.

[Ruffabug in reply to ChrisColumbus]

thank you.

[SueJohnson]

From my research, I don't think there is any problem of the chemo drugs affecting the Ropinirole detrimentally. If there is, then ask to increase the ropinirole dose. Although 4 mg is the maximum dose, this should not apply in your case. The main thing is many drugs that are used to treat nausea can make RLS worse. Ask for Kytril (Sustol, Granisetron, Sancuso), Anzemet (Dolasetron) or Zofran (ondansetron). Also as you go through this and your doctors prescribe other medicine, if you list them here I can tell you whether they make RLS worse and perhaps give you a safe substitute. The opioids they give you will greatly help your RLS. As far as when you are in a coma, it won't matter if your RLS is worse, because you won't be aware of it.

[Ruffabug in reply to SueJohnson]

Thank you Sue for your reassuring reply. As always you are so helpful.

[Joolsg]

I am so sorry to hear your news.I think you need to have a long, detailed discussion with your oncologist and nursing team and explain about Ropinirole. If it is still working for you and you are not augmenting, then stay on it throughout your treatment and hospital stays. Ensure everyone knows what dose you take and when so that you are given the drugs constantly.

Explain that even if you're not conscious you will be experiencing the sensations and they must ensure your medication is administered throughout. Type up an ALERT sheet and ask friends and family to keep asking the hospital about Ropinirole.

At some point, you will be given opioids and they will help RLS and PLMD.

[Ruffabug in reply to Joolsg]

thank you very much that is very helpful.I will do that.

[Opie__]

So sorry about your stage 4 diagnosis, my cancer was only stage 1a but an aggressive form. I still took my Ropinerole all thru Chemo and didn't notice any difference. I did have my RL act up during Chemo treatment because I forgot to take Ropinerole before starting treatment. I tended to sleep mostly thru the 5/6 hours of treatment if I took my meds . In my oringinal surgery for cancer , I had not problems with RL during hospital stay. The surgery to insert Chemo port, I remember hearing the nurse taking me back to recovery say "her RL are really acting up". I then noticed how much I was moving my legs. The hospital had no meds to help with RL and I forgot to take any RL meds with me. I was pretty miserable for that one day surgery. I will be having my port removed once I have my second CT scan and it shows no sign of reoccurance. I reached out to the Restless Leg Syndrone Foundation and asked about what meds given during surgery would not affect my RL? They responded very quickly, I can't find the email right this minute or I would share. I joined the RLS a while back and they have lots of info on line plus the magazines. Will be thinking of you and your journey forward

[Ruffabug in reply to Opie__]

thank you.. that was interesting. It all helps.

[SueJohnson]

Some good points by Opie_ about when you are in the hospital. Tell all your doctors about your RLS and its symptoms and that you need your medicine and ask if there will be any drug interactions from what they will give you. Also talk with the patient representative ahead of time. It is a good idea to bring your own medicine, but don't tell them you have it since they will insist on giving you medicine prescribed by the hospital. That way if they don't follow through you can take the medicine you brought. Tell them not to give you any sedating antihistamines or sedating anti-nausea medications. As mentioned before Instead insist they use Zofran for anti-nausea. You can download the Medical Alert Card that you can show your doctors, that tells them about the condition and what will happen after surgery and what medicines to avoid at rlshelp.org/ although you will need to join the RLS foundation. An international membership is $40, but they have some good information on it and you get their monthly magazine. However the safe antidepressants listed on medical alert card are not antidepressants: Lamotrigine, Carbamazepine, Oxcarbazepine.

[Ruffabug in reply to SueJohnson]

what are they then? That sounds very strange.

[SueJohnson in reply to Ruffabug]

Lamotrigine treats epileptic seizures. The other two are anticonvulsants.

[Shumbah]

I hear you that is why I planned my end game at Pegasus in Switzerland.

My family and GP are fully aware

I m not afraid of dying , I’m not scared of cancer , I’m terrified of suffering RLS

[Ruffabug in reply to Shumbah]

yes I fully understand and empathise with that.

[HipHop1972]

Oh bless you Ruffabug, I am so so sorry that you have to go through all this, I will be 77 at end of January and am trying to imagine what you must be feeling and of course I can’t and would not be being truthful if I said I did. As with all things a person only truly knows the feeling if they are experiencing the same. You mention that your not afraid of death, I don’t think I am but it’s the manner of that dying that would concern me. I don’t know if you have a Religious faith, I do, and you could ask why me and I think the only answer would be, why not. That may sound harsh but it’s not meant to. The world is full of unfairness and we thank God if we survive unscathed. My 27 year old Godson who I was also guardian to was married with and had their first baby a little girl my Godson was a minister in a hutch he set up in a very poor district in a City in the Uk, his father was a Anglican Vicarand my family and there’s have been friends fo over 40 years. Anyway my Godson was diagnosed with a brain tumour and no matter how difficult life became he never ever complained he was the bravest person I’ve ever known, an inspiration to his family and to me and he was absolutely convinced of the Love of Jesus Christ and that even knowing what he left behind that he was going to a better place. I’ll pray for you a prayer of comfort that all your questions will be answered. I hope you don’t think I’m preaching as that’s not the case I believe but don’t expect others to do so.

May God bless you and keep you and Matt his light shine upon you

Peter

[Ruffabug]

Thank you for your kind words.