This is day 7 after my first infusion last Tuesday for second recurrence in my peri Aortic lymph nodes. It's the heavy guns of Carbo / TaxoI which first zapped these aliens when I was diagnosed in 2011. NED until 2016 when it recurred in the same lymph nodes. Despite my protestations I was given Carbo only even though the guidelines say if you're platinum sensitive with a long NED then you certainly qualify for the combination.
Fast forward to last year when it recurred in the same lymph nodes. After watch and wait I was finally given my treatment plan by a different oncologist. I'm back on Carbo/TaxoI but of course three years older and having had a mastectomy and Radiation in between times.
This is where you my lovely fellow warriors can give me the benefit of your wise advice. I had conveniently forgotten just how vicious this regime is. I know you stop paracetamol but it's replacement Tramadol is truly vile. My nightmares are unrepeatable . I talked to my CNS yesterday and she agreed that they were awful. I discussed a drug called Cymbalta which I was prescribed for post mastectomy pain if other pain killers weren't working. I came across them last week and it seems they are also used for peripheral neuropathy ! She told me to go ahead and try them.
So now my Big question to all of you is! Have you ever taken this drug ? If so did they work?
This was going to be a funny post but my funny bone somehow got lost . Thanks for reading this. Take care.
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IrishMollyO
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Hi. I feel for you, having just finished frontline carbo/taxol and having bad neuropathy the last two cycles. I've been taking paracetemol the whole time. I was prescribed Cymbalta for sciatic nerve damage a few years ago and it may work but it made me feel horrible so I stopped taking it after a few days. I may not have given it a chance. My oncologist thinks it's the best thing for neuropathy pain but says a lot of people can't tolerate it. What about Gabapentin?
Thanks so much for your reply which is really interesting in that you are the second person who continued on Paracetamol. Which country are you posting from ? It's also interesting that you had bad side effects. I will also look into Gabapentin.. I appreciate all your advice
I was given Celebrex which is a good pain relief drug and I took it with paracetamol. Tramadol scares me I get really dizzy with it. I haven’t been on the ones you mention
We do however have an office that has been over taken by every drug imaginable. So I’m sure I can find something to suit 😂😂
Thanks for your reply Lily-Anne. My bedroom probably equals your office! Because I'm currently on chemo Paracetamol is a banned substance for me at the moment.
I was reluctant to start the Cymbalta having read the side effects which is why I put up the post. I would so love to hear of a natural remedy.
I will certainly look into Celebrex.When I asked the CNS if they had anything other than Tramadol the answer was no! I myself suggested Cymbalta . Although they knew about this drug it was never suggested. One wonders if Tramadol and Codeine is the only thing on offer to cancer patients despite the dreadful opioid side effects. Maybe they think it doesn't matter because they guess wrongly that we won't be around long enough to get addicted. Sorry
Lily-Anne that's the big cynic in me coming out!
I hope you're having good moments right now as I have lost touch somewhat over the past few months. Thanks again and take care.
I cannot understand why you cannot have Paracetamol.
We are all Ovarian Cancer sufferers on this site and Paracetamol is the only medication for minor pain we are allowed when on Chemo.
No aspirin and no Ibuprofen.
I never took Paracetamol before, but it worked wonders for me and also increases the pain relief quality in codeine.
I had terrible bone pain/joint pain with Carboplatin/Taxol and Paracetamol did help, but I was very sick so suffering in bed with all the side effects was my only course if action.
I never considered trying to eliminate the bone pain entirely; just to suffer through it.
It usually came on a few days in, but faded after about 7 days.
I only had neuropathy in my feet, but when I began to feel it in my finger tips, I got worried and we lowered the dose of Taxol.
I was still NED at the end of it , so it was okay.
My daughter took Gabapentin for neuropathic pain and I think it is pretty benign, but does/can have a psychoactive aspect that might be difficult.
She is now taking Topiramate, which seems to be pretty harmless.
So there you are!
I live on Omeprazole, Cyclazine and Paracetamol while on Chemo. And switch back to Ibuprofen when off.
Thanks for your very detailed reply and had to read it a few times as having been through chemo twice before the one thing I have always remembered is to stop taking paracetamol . The reason given was that it can bring down your temperature . This could in turn mask a serious infection due to low immune system which can only be treated in hospital.
Now Linda you have turned my whole thinking around! I have gone online to find as many Yes s as No s ! I think you have started a very big conversation! I'm not sure I can persuade my oncologist to think differently . I would so love to think I could take them. Thanks again
I think this is the reasoning behind Paracetamol: it’s good for aches and pains BUT yes, it can mask an infection, which of course we are all prone to as our white cells drop...so perhaps ‘as & when’ is ok when on chemo, but not taking it regularly? Just my thoughts.
I was just given a total ban each time. There were no if s or but s . No waiting for my good week. Maybe this is just an Irish hospital rule ? Perhaps some of my Irish ladies could let me know if this so. I may put up a separate post as they may not be reading this one!
Hi Laura. I received the same advice from my medical team during tax/carb/avastin chemo.. that is, to avoid nsaid's and fall back on paracetamol if I needed pain relief.
Maybe it depends on potentially existing individual circumstances, allergies, co-morbidities etc, which pain relief each of us is allowed during which treatment?
I have been on cymbalta for a year now. I have nerve damage in my ribs from thoracic surgery (pleural effusion) as well as some neuropathy from chemo. My pain doctor at memorial Sloan Kettering in NYC prescribed it for nerve pain. I feel like it has helped my pain a lot. It also is a mild mood stabilizer which is an added bonus.
Thank you so much for your reply. It's good to hear from someone who tolerated this drug while having a good response. I am reluctant to start on something that can be difficult to wean off. Your reply is helping me make up my mind. Thanks again
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Hi Molly O, I too have a plethora of drugs to choose from in my house. Tramadol, Oxycodone Naproxen especially. My gynae nurse told me to cut out all except Panadol, My gp refused to change to a nerve pain until I got a diagnosis so got more oxycodone. So here I am totally muddled too, I took tramadol last year and recently my Onc told me to go back on it. So what do I do? I am returning to Beacon for treatment, got a phone call today and I wonder how I am going to get from Luas stop to the hospital its a long walk. So I too need to get that pain under wraps. My pain is also nerve pain. The dreadful stinging has gone. So today tried oxycodone low dose, made pain bearable but that's it. Tomorrow I might try the Tramadol which is Panadol and codeine I think. The naproxen are out because of kidney problems. You can take Panadol with the Oxycodone. I will ring my gp tomorrow and ask him. Will take Panadol later and try the tramadol tomorrow. I only took one oxycodone today the 5mg. I did ask the nurse who rang me today from Beacon and he said that he wasn't qualified to tell me what to take, so in that event neither is my gynae nurse. What a muddle
Thanks for your advice. The replies today surprised me as my hospital was always so adamant about not taking paracetamol while on chemo that it never occurred to me that other hospitals did allow it. Does yours ?
So you're back to the Beacon. Is this for treatment or investigation of your hip pain ? I'm not familiar with its location so I don't know how near it is to the
Luas. I hope it's not too tiring on you and I wish you success with your appointment. Take care and God bless
You poor thing, I was wondering how you were getting on after the combo.
The reason for not taking the paracetamol is that it may mask a fever - sure we all know the dreaded 38 when that shows up on the thermometer! But if you check your temp before hand and it's not elevated, and so long as you're taking it for pain as opposed to cold/flu relief, then I can't see how taking 2 here and there could hurt!
One other thing though to take into consideration is that paracetamol is metabolized by the liver. So with the carbo/taxol regime, the liver is working pretty tough to detox all that crap too.
I took tramadol, found it strange at first, but then seemed to get over the 'weirdness' that comes with it pretty fast. I was given Ponstan for the bone pain also and it was AMAZING. It's a type of anti inflammatory but not seemed fine with the regime.
As for the neuropathy side of it, I didn't take the cymbalta but have heard of people getting it. That or Lyrica can help very well for it.
Hope you're doing ok. Thinking of you and that fantastic smile of yours! Keep us posted how you get on
I did reply by PM to your very kind words of advice on Saturday. I’m not sure if you got it . As it was written under the influence of my first cocktail of Carbo/ Taxol it was long and rambling and some would say my usual style! If you did read it you may have been driven to get on your bike and go to the furthest part of the country . I made it private as for obvious reasons I did not want to make public certain details plus it’s against the rules of the website .
I took Tramadol before but this time was different. The nightmares were horrific during the times I could actually sleep. I don’t know if the dizzy dozy feeling was caused by the chemo or Tramadol but when I stopped it I came back to a more normal feeling.
I feel so much better during my good week which has already started. I just need one or two Codeine a day and I’m good to go. I’m not looking forward to round two next week as I’m finding it much tougher than 8 years ago. However this week I will do all the things I need to do while I’m feeling normal. I am collecting my new hair on Friday. Unlike you Serena I don’t rock the Sinead O Connor look. I look more like one of my brothers on a bad day ! I am also getting my eyes tested and have already chosen my designer frames .
I will discuss my tablets on my chemo day and will have a chat with my pharmacist too. I may even have time for retail therapy !
Thanks again Serena for all your valuable advice . Take care
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Mary
That is interesting Ponstan , never offered that to be honest. Think I better stay off Naproxen even though my gp is adamant its okay, As I mentioned to Mary I am back on Oxycodone with a lot of lactulose. maybe might be told something else by Prof in Beacon next week, I have to watch my one and only functioning kidney
Thank you so much for asking. I'm finally about to write a post as I have dropped out of sight since I last posted. You.have given me the push I needed. I'm just coasting along and waiting for my next app on 5 September. My last treatment just worked 50 %. Will write in more detail in my post. How are you doing ? I'm a bit overwhelmed by how many new women have joined and how many have passed on in the past year. Such a wretched disease. Take care
I feel the same about those who have passed away. It’s been a dreadful year. It’s so sad & frightening. Some days it’s impossible to face the forum. I’ve turned off notifications so I only see messages when I open the app. I find that better. I’ve lost track of the new ladies a bit.
I’m doing well, I think. I’m on Olaparib for four months. Side effects are minimal, so far. I’ve a CT scan in mid September. I’m doing lots of nice things between now & then, just in case! It’s hard to be confident about it. All that sounds quite negative but I’m actually in good form and mostly busy. I’m in Derry tonight for the Brian Friel festival. I saw a superb production in the Guildhall this evening.
I hope that you’re doing as many nice things as possible too.
I still didn't write that post ! That long finger of mine has just got longer . I hope you had a good night in Derry. Tomorrow my brother and I are meeting a lovely friend of his for lunch. She was an Oncology nurse in Chicago until she retired and I really enjoyed meeting her last year too. She had some interesting stories to tell.
Take care and Good night and watch out for that post
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