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Advice needed urgently about chemo and setting

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  • #16
    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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    • #17
      Lasting miles of BEP x 3. Two weeks and 1 last bleo shot and it will be done !

      JP
      December 15, 2015 : Right I/O. Markers normal.
      December 24, 2015 : Merry Christmas ! 100 % pure EC, no LVI.
      January 7, 2016 : CT scan : 2 RPLN of 8 and 9 mm
      February 2016 : Markers normal.
      March 2016 : Markers normal.
      April 2016 : Abnormal B-HCG (43). 14 mm (from 8) and 10 mm (from 9) lymph nodes.
      April 25, 2016 : Happy birthday ! Relapsed confirmed.
      May 2, 2016 : BEP x 3 begins.
      July 3, 2016 : BEP x 3 ends.
      July 2016 : Serum tumor markers normal. 10 mm (from 14) and 6 mm (from 10) lymph nodes. Back on surveillance !
      December 23, 2016 : Merry Christmas ! Serum tumor markers normal. 6.8 mm (from 10) and no more visible (from 6) lymph nodes. Surveillance continues.
      June 2017 : Serum tumor markers normal. 4 mm (from 7 mm) lymph node. Surveillance continues.

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      • #18
        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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        • #19
          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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          • #20
            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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            • #21
              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; 06-23-16, 12:01 AM.
              Jan, 1975: Right I/O, followed by RPLND
              Dec, 2009: Left I/O, followed by 3xBEP

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              • #22
                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, 11:20 PM.

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                • #23
                  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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                  • #24
                    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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