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Advice needed urgently about chemo and setting

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  • spok
    started a topic Advice needed urgently about chemo and setting

    Advice needed urgently about chemo and setting

    Hi to all and thanks for letting me join. So much inspiration from all of you. Here's my case

    Stage II non-sem Mainly EC spread to lymph nodes and one is 4cm. I want RPLND but guess it's not viable so will have to do Chemo. Here is question: I am living in Hong Kong, which has excellent health care BUT they don't see many TC cases and fewer in westerners. I am concerned that doing Chemo here might be compromised by language problems (i.e. explaining symptoms, checking what they are doing etc). Also will they just be following standard protocol and not adjusting things based on progress or lack of. All the doctors here say there is no problem at all with the language or skills involved in administering the chemo. I am not so sure.

    The other option is very expensive and disruptive. That is to go to the Royal Marsden to have the treatment. I will need accommodation and have to give up my life in HK for six months. The treatment must surely be better, but from your guys experience, how important is it to be able to communicate freely with the chemo nurses, and do you think it would be worth spening huge dollars ONLY To get the chemo in london. (not RPLND, for RPLND i would go straight to David nicol at RM).

    one more thing to add: from my research there have been no westerners undergoing Chemo for TC in HK (I guess they go back to their own countries as they employers would not want them on full pay doing nothing here). On the forum, I noticed one guy who was getting treated in Japan but not many posts from him. Another guy Swoody in Thailand wrote some fab posts about his treatment but then things got worse and I am sad to say that I think from his posts, he didn't make it.

    I am seeing an onc on Monday here to see what his take is though I am quite sure he will be gung ho about doing it here.

    Thoughts would be much appeciated

    Spok

  • PNW mom
    replied
    Thanks. We actually just had his oncology appointment. Lymph nodes less than 1 cm and markers normal/zero! So just watching for now. Hoping he can avoid surgery.

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  • spok
    replied
    PNW Mom, thanks so much for this. I am really touched. I will research all of these, and this kind of info is soooo what I need out here, they just don't see enough TC to have these type of things at their fingertips. I truly hope your son is on the mend, he has a wonderful gift in you, looking after him.

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  • PNW mom
    replied
    I've been lurking here for a bit, but this is my first post. My son has Embryonal carcinoma and has just finished 3 x BEP. As well as being a worried mom, I'm a physician. I've been following you story and really feel for you going through this away from home, and with a potential language barrier to deal with. I've hesitated to post some of my thoughts on meds, since oncology is definitely not my area of expertise, but I do prescribe many of them on an almost daily basis. For what it's worth, here they are:

    Gabapentin is great for treating existing neuropathic pain, but it probably isn't all that useful at preventing it. Unfortunately, meds that seem to protect nerve cells also protect cancer cells (like antioxidants such as N-acetylcysteine and glutathione) and should probably not be used as they can interfere with the efficacy of your chemo meds. What I ended up suggesting to my son was topical 2% menthol cream twice a day, and melatonin 6 mg. Here's a link with some info on menthol.
    http://www.ascopost.com/issues/octob...ality-of-life/ .
    Melatonin may have some benefit at preventing chemo neuropathy and ototoxicity, and may possibly enhance the efficacy of chemo. FWIW my son has not had any symptoms of either neuropathy or ototoxicity. Many/most don't, so it's impossible to say if it's because of the menthol and melatonin, or just good luck. There's early and promising research, but no definitive answers or meds with approved indications for the prevention of chemo neuropathy.

    Ondansetron works well for nausea and vomitting. You'll probably get it iv with your chemo. My son also takes oral Ondansetron the morning before and evening after EP, as well as oral dexamethasone. He didn't experience any nausea or vomitting throughout chemo. Ondansetron is a 5HT3 antagonist (a type of serotonin receptor). It works well, but is very expensive. Sometimes they'll use cheaper old school antipsychotics for nausea, such as metoclopramide (Maxeran)or Prochlorperazine (Stemetil, Compazine). These are also antagonists at 5HT3 receptors, but can have some serious side effects due to their dopamine blocking properties, such as tardive dyskinesia, dystonia and acute akathisia. I'd try to avoid them if you can. Olanzapine is a newer antipsychotic that also has 5HT3 antagonist properties, and it can be useful for chemo nausea. It has a lower risk of side effects than Stemetil or Maxeran, but certainly not zero. Another option is Mirtazapine (Remeron) which is an antidepressant. It's also great for sleep and anxiety, and is a good 5HT3 antagonist with a much longer half life than Ondansetron (20 to 40 hours versus 5 hours). And it's very inexpensive. Because of the long half life you'd want to start taking it 5 days before chemo, to reach steady state serum levels. It's pretty sedating. If Ondansetron isn't an option, for patients with illnesses like Bipolar Disorder or schizophrenia I'd use Olanzapine. For patients with depression, anxiety or insomnia I'd likely choose Mirtazapine.

    These are all just starting points for you to do some reading and research, and then discuss with your oncologist. I'd take a look at pubmed as a starting point. (The menthol research is primarily in the last 3 years, and the results of a Phase II neuropathy prevention trial were just presented this spring, but possibly haven't been published yet). It's important to remember that every case is different, and there may be specific reasons they'll choose one drug over the other in your case. So you'll want to discuss your preferences with your treatment team.

    Hope this is of some use to you. Good luck, and let us know how it goes.
    Last edited by PNW mom; 06-23-16, 10:20 PM.

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  • Davepet
    replied
    Originally posted by spok View Post
    Hi Bones. Thank you that is excellent information. Sounds like a good plan to get on to it straight away.
    Absolutely not a plan, I never take a drug until I have the symptom it's supposed to treat. Every drug has potential side effects & not all of them are well documented.

    Dave
    Last edited by Davepet; 06-22-16, 11:01 PM.

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  • spok
    replied
    Hi Bones. Thank you that is excellent information. Sounds like a good plan to get on to it straight away. Your husband sounds like he has fared well. I will ask to see if that drug can be gotten

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  • Bones
    replied
    My husband was prescribed Gabapentin to help with neuropathy. He has 3 x EP and it came on pretty quickly during an infusion one day so he was started on a fairly high dose. After his course ended he was on a lower dose for 3 months. He never had it in his feet, only his hands and now 6 months later he says he think he might have a little weakness in his right hand but only if he reallyy thinks about it.

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  • spok
    replied
    great! that's excellent. JP can I ask, do u have different nurses do the administering each day? Personally, Im hoping I can have experienced nurses, Today I saw 2 that were not yet 20!

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  • jpboucher
    replied
    Lasting miles of BEP x 3. Two weeks and 1 last bleo shot and it will be done !

    JP

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  • spok
    replied
    JP, I assume you saw my post on the other thread, so I didn't reply to you question here. How is the treatment going? you are in the final leg?

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  • jpboucher
    replied
    Spok,

    How was your meeting today ? What did your onc said ?

    Jean-Philippe

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  • spok
    replied
    Thanks, JP!

    Seeing an Onc for first time tomorrow. Do you (or anyone) have any good questions to ask to establish if this is a good onc or not?

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  • jpboucher
    replied
    Spok,

    There are no effective preventive strategies to avoid cisplatin induced neuropathy.

    Neuropathy usually develops only after a cumulative dose of 300 mg/m2, so not so frequent with 3 x BEP. However, there is a marked individual variability.

    For me, I only got mild paresthesia after 1 cycle, no relapse to now.

    Jean-Philippe

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  • Davepet
    replied
    Nothing I know of reduces chemo-induced nueropathy. Some seem to get it, some don't, but most that do, it's more annoyance than disability. There is a school of thought that slowing down delivery speed seems to help, but nothing I've read proves that. Since susceptibility to nueropathy seems to be so individual, they may never find out how to avoid it in all cases. The main thing is, if you need chemo to save your life, whatever minor problems that causes are just a price that has to paid for some of us. It can be easy to forget when so many of us survive TC these days, but without the treatments ( & the associated side effects) this board would have maybe a dozen active guys still alive & most of those waiting to die. Maybe some day they will find a treatment without side effects, but I doubt they will. I recently had some really nasty side effect from some first line blood pressure meds that make my nueropathy look like a walk in the park, so every medical treatment has potential side effects. Just have to decide if the results are worth the problems.

    Dave

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  • spok
    replied
    thanks, Biwi. Good info.

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