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Pain From Diagnosed Cancer, Not From Treatment

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  • marijen
    marijen Member Posts: 2,181
    edited September 2017

    Tarheel I see no hormone therapy first time around? Did you opt out? What is 46 pain level? Yikes! So sorry you are hurting. No chemo for me EVER too.

  • tarheelmichelle
    tarheelmichelle Member Posts: 248
    edited September 2017

    4-6, I mean. My phone likes to annoy me when I typeposts. :-). I didn't even try hormonal treatment after Stage I treatment. The Tamoxifen I was supposed to take served me later, as Stage IV treatment.

  • marijen
    marijen Member Posts: 2,181
    edited September 2017

    Looking back do you think it would have made a difference

  • tarheelmichelle
    tarheelmichelle Member Posts: 248
    edited September 2017

    No regrets. Tamox as a preventive may have slowed down time to progression but not eliminate progression. I think my mets were there from the time my lump was discovered. The position of my metastatic lesions supports that. No mets in my breast. I have had such a hard time with my treatments, very sensitive to side effects. I'm really glad I wasn't on preventive like Tamox after my lumpectomy/radiation. I was doing a lot to change my life (divorce, move halfway across the country). I wouldn't have had the energy.

  • marijen
    marijen Member Posts: 2,181
    edited September 2017

    Thank you, that makes good sense, AI has become too painful for me. I'm surprised you rate your pain at 4-6, that seems low. Maybe that's how you rate it with the painkillers.

    Hope you can get a good night's sleep.

  • edwards750
    edwards750 Member Posts: 1,568
    edited September 2017

    Of course its a personal decision to take hormone therapy or not. I was afraid not to. I followed the conventional treatments from start to finish and never thought about opting out. For me I didn't want to look back and wonder what if.

    Everyone is different of course. I know a lady who did take Arimidex and still had a recurrence. She did however have a lot of other health issues including diabetes and lung problems. Also her BC was aggressive from the start and that certainly didn't help.

    Side effects can be debilitating. Quality of life has to be taken into account. I was blessed I didn't have any.

    Diane

  • tarheelmichelle
    tarheelmichelle Member Posts: 248
    edited October 2017

    From the start of my Stage IV diagnosis, the tumors have been painful: bone mets and pleural effusion, now resolved. I've been on opiates, rotating the when my body built up resistance. I was losing my response to opiates altogether -- I was on triple doses of Oxy. I had a Ketamine infusion last week. It was not a pleasant experience, even though I had been told "some people feel euphoric afterward." It was a "bad trip." Still, it did some good. I have been able to reduce my daily pain medicine from 200+ mg Oxy to 40 mg Oxy, combined with 20 mg Methadone, which we are trying to transition back to. It's not known how long the effects of the treatment will last, but I'm happy to be on lower doses of opiates.

  • Lindalou
    Lindalou Member Posts: 598
    edited October 2017

    Good to hear that you can reduce your opiates. Sounds like the infusion was harsh. We all endure a lot don't we? My body is sensitive to the tx's too. Had Carbo and Gemzar 2 weeks ago and got hit hard. I was so sick I couldn't take my OXY so I've gone without pain meds. I see MO next week to revisit/review new tx. I'm a challenge for him, and he always tries so hard to pick a tx that won't side line me but my body has other plans. Hope all of you are doing ok, coping with pain.

  • marianelizabeth
    marianelizabeth Member Posts: 1,156
    edited October 2017

    Tarhee, when you mention Oxy do you mean the time release? Since my pre and post diagnosis has been relatively recent I have gone from 10 mg Oxyneo (time release over 12 hours) to 30 mg twice a day and 5 mg (usually 2) for breakthrough andI generally am using them 2 or 3 times a day. I have a good pain management team at our cancer agency and along with my MO and the doctor at the pain management team it seems rio be working. I am told this is not high dosing as yet. I am also on pregabalin 50 mg which I think this week will double. I swear it is that not the oxys that make it hard to drag out of bed every day. Oh and almost forgot~~ my Venlafaxine (called I think Effexor in US?) has been increased from 150 mg to 18.5 as a co-analgesic and I am on 1000 mg of extra strength Tylenol also three times a day. Your thoughts on all? Also if I could give you a gentle hug, I would. BTW, what is Ketamine? Methadone has been mentioned for me down the road.

  • tarheelmichelle
    tarheelmichelle Member Posts: 248
    edited October 2017

    MarianElizabeth:

    Methadone is the "gold standard" of cancer pain. I've taken Oxy, Dilaudid, Fentanyl, Morphine, Percocets -- everything -- . Methadone works on all pain receptors and has the least amount of withdrawal symptoms. Oxy is the worst. I've had to rotate pain meds every 3-6 months because I built up a tolerance. I got almost 2 years out of methadone.

    Do not trust doctors who tell you that you are not at a high dose yet. I don't mean you should find another doctor. Look at their POV -- they want to help our pain, and not make us feel bad. You will continue to need more and more pain meds. Please think about switching to methadone now. (One of my pain doctors calls Oxy "the devil" and I agree. It cuts the pain but the side effects ...) I started at 20 Oxy 3 times a day, extended release, with 5-10 mg immediate release as needed. I blew through that in a month. (I had rotated through Oxy twice before, but had not taken it since 2014.) My dose was upped several times until I was taking 60 mg 3x day. That could be a low dose or a high dose, depending on who you are asking. But for me, it was TOO MUCH because it was THREE TIMES what I had taken before, my pain still wasn't fully resolved, and I couldn't get off the couch.

    That's way too much Tylenol for me. I'm not sure how extensive your mets are. And pain is a personal thing. But I have cancer throughout my spine, ribs, sitting bones, etc. No way I could take that much Tylenol and Oxy. I'm just sharing my feelings, not judging your choices.

    I'm so freaking jealous of Stage IV sisters who can work, cook dinner every night -- whatever. Hoping I can get back to something after several months of being bedridden from pain, basically.

    Ketamine is an surgical anesthetic/tranquilizers. Some doctors have had success treating patients with depression/chronic pain. There are several free-standing clinics here in the US that promise to treat depression with Ketamine. My city has a pain clinic of good repute where I was referred. My treatment was a 4-hour Ketamine infusion. It left me in bed for 2 days. Horrible. Near death experience. But ... but -- my pain AND my pain medicine has decreased DRAMATICALLY. I took 20 mg Oxy yesterday. I'm transitioning back to methadone.

    LindaLou you are so right -- the things we endure!!!

  • Lindalou
    Lindalou Member Posts: 598
    edited October 2017

    Ronda, I can't imagine what you endured. How are you doing now? What meds are you on now after the Ketamine?

    I started Fentanyl 25 and it's only been 13 hours, but 13 hours of intense pain as the Fentanyl has not reached it's peak yet. Pharmacist said it can take up to a day and a half. I took OXY 10 just now with it in hopes it helps. I'll ask about Methadone next week.

    Maria....tell me about Pregabalin.


  • marianelizabeth
    marianelizabeth Member Posts: 1,156
    edited October 2017

    Londalou, Pregabalin, also called Lyrica is being used in ny case for nerve damage pain. Gabapentin is similar. It is unclear what drug it is that makes it hard to wake up. I thInk the 8 palliative rads sessions which ended September 19 may actually be having some effect but I will keep you posted.

    Tarheel, I am hoping you are having some pain relief.

    Maria

  • tarheelmichelle
    tarheelmichelle Member Posts: 248
    edited October 2017

    Ladies my pain has decreased. I’m now taking 5 mg methadone morning and evening. This is a huge improvement. I’m happy about it. It will not last; I’m told.

    However, I’m on my first month of Ibrance and it’s been pretty wretched. Nausea, stomach pain, mouth sores and fatigue. It does seem to be getting a wee bit better. I’ve been horizontal for months because of pain and am so looking forward to resuming activities. I just need some strength!

    I’ve discussed with DH going to a state with legal marijuana and trying it. I don’t ever want to be in pain like before. I’m not hurting now but I would feel better knowing that I could use pot for pain control. It’s not legal in my state but I’ll go to where the pain relief is, when necessary

  • Lindalou
    Lindalou Member Posts: 598
    edited October 2017

    Ronda, It is so good to hear your pain has decreased. I was on Ibrance for 5 months and found that the SE's slowly got better. I hope this is the case for you as well. I took mine in the morning with breakfast and that helped.

    Maria, Good news that you are having some relief from the rads and sounds like your pain management is good as well.

    I'm taking OXY every 4 hours along with the Fentanyl so I'm not so keen on that. It helps some with OXY as breakthrough but only for an hour or so. For those on Fentanyl, did higher doses help much? I'm trying to get the pain under control before I start Xeloda on Monday.



  • tarheelmichelle
    tarheelmichelle Member Posts: 248
    edited October 2017

    LindaLou, what I found with Fentanyl patches is that they never lasted 3 days. My doctor always wrote them for 2 days. As I developed a tolerance to the drug, it seemed that Fentanyl lasted a shorter amount of time, down to about 12-15 hours at the end. I believe I went up to 75 mcg patches. Maybe 100. That was the only pain med I didn’t like to drive while taking.

    Ibrance seems to be changing how I react to other medicines. I had been taking daily Claritin, but when I forgot a couple of days in a row, I ached less. Could be coincidence. It was different than AI aches. But my nausea seems worse. The nausea seems Ibrancerelated but who knows. It’s tolerable but I wish it would go away. My backside is still sore from Faslodex shots 9 days ago. I’m going to request a different nurse and complain to oncologist.

    Wishing everyone a pain-free weekend.

  • Lindalou
    Lindalou Member Posts: 598
    edited October 2017

    I don't last 3 days on Fentanyl either so using OXY for breakthrough but tired of that. I will increase the patch dosage because during my last chemo I couldn't take any pain meds because I was so ill from the SE's.

    I see you have been taking Fas since 2012. I had a good run on it as well, ( 6 years with minor progression) but developed severe sciatica and then a lot of progression. My SE with Ibrance was mainly diarrhea, and mouth sores. I fought the nausea as well, but finally started taking Zofran which helped a lot. Have you tried any of the anti nausea meds? I hated the idea of yet another pill, but the nausea was less, and then the last 2 cycles for me I didn't have to take anything at all. Be sure to take it about 15 min after you eat and I also found that eating a fair amount made a big difference in nausea too. Good luck.

  • tarheelmichelle
    tarheelmichelle Member Posts: 248
    edited October 2017

    thanks Linda! I am actually on Faslodex for the second time. The first time it didn’t do anything for me and I had significant progression, with the cancer spreading into more of my pelvic bones. But, my oncologist and I both felt like I needed a break from AIs, which is why I’m doing Ibrance with Faslodex not Femara. I have an unverified hunch about why my side effects to cancer treatment are so bad; I’m wonder, since opiates slow down nerve receptors in intestines, leading to constipation, if there’s a chance that my doses of AI were staying in my system too long, which would explain horrible side effects and good response to meds. (I’ve never taken an oral cancer treatment every day; usually every other day. Until now without Ibrance.)

    I’m still on 5 mg methadone first thing in the morning and in the afternoon around 4. Usually take Advil or Alleve as I seem to have a headache or joint pain that bugs me. But no major cancer pain at the moment, which is a huge deal to me, since so many of my bones have lesions.

    Does anyone else have success with other pain meds?

  • babyduck
    babyduck Member Posts: 32
    edited November 2017

    Glad to have found this board. I suffer still with pain (mostly legs and feet from neuropathy).

    I'm currently not on tx, however, had 3 yrs of something without much if a break. I thought by now I would be able to be off meds but this just seems to be my lot. I currently take 4 15 mg oxycodone throughout the day. Hoping to get down to 3 if NED stays around.

    My ? For you ladies...Have u experienced times of no treatment but still had pain enough to keep taking meds??

    Thank You all for your honesty on this subject. It's tough what we go through and sometimes hard to cope. TX or not.

    Thanks in advance for your responses!

  • Lindalou
    Lindalou Member Posts: 598
    edited November 2017

    Hi Babyduck....I've always been on some sort of treatment, but did have a break for a 2 month period where, yes I had to keep taking pain meds. Have you had Ibrance or Xeldoa or other treatments since Carbo/ Gemazar? That combo was harsh on me. I'm on Xeldoa now.


    I recently had a reaction to Fentanyl 25 so that option is out for me. Back to OXY.

    How's everyone feeling?

  • tarheelmichelle
    tarheelmichelle Member Posts: 248
    edited November 2017

    hi Babyduck and welcome. This thread is specifically for cancer pain, not treatment pain such as neuropathy but please don't go away. Maybe you will find some suggestions here to help. Tried Gabapentin ?

    I am not an Oxy fan, personally, because even when it manages my pain the withdrawal side effects start aka "heebie jeebies" -- I am much happier on methadone.

    I visited with my palliative pain doctor, back from a 3-month maternity leave. I am still on two 5 mg methadone daily. Methadone has a long half life, so sometimes I can go all day with just one 5 mg, other days I take both 5 mg before lunch. Now that I don't have bone pain from letrozole, my pain is much more local. I was unable to wear certain shoes, on letrozole, my foot bones hurt so much. Right now, 90% of my pain is lower spine/left hip, where cancer is most active. Unfortunately the faslodex shots hurt too. Methadone nor Claritin help. Tylenol, Advil, and lidocaine patches have provided relief. My doc approves. Tylenol has never helped my headaches but thankfully seems to help skin pain.

    Wishing all a pain free day

  • marianelizabeth
    marianelizabeth Member Posts: 1,156
    edited November 2017

    Cancer has caused neuropathy so it is not from treatment.

  • marijen
    marijen Member Posts: 2,181
    edited November 2017

    Post Removed. I didn’t mean to offend anyone, just wanted to warn everyone.I have first hand experience with gabapentin. And then thearticle came out on how it affects brain synapses. I won’t go into the details.

  • tarheelmichelle
    tarheelmichelle Member Posts: 248
    edited November 2017

    Marijen, every drug has good and bad effects. Oxy and morphine aren’t exactly vitamin supplements. This discussion is for people experiencing pain, and posting that Gabapentin is a “bad drug” may make some people feel judged. I am definitely not a fan of Gabapentin. I believe it’s overprescribed. However, it got me through 3 months of uncontrolled pain this summer. I don’t want anyone reading this to feel stigmatized if they need Gabapentin or any medicine taken with their doctor’s consent. Tobe clear, I appreciate your post.

    Marianelizabeth, I’m not familiar with cancer-caused neuropathy. How is it distinguished from treatment-induced neuropathy? Are pain treatments similar? I had neuropathy from spinal radiation that lasted about a year, that pain medicine didn’t touch.

  • wildplaces
    wildplaces Member Posts: 544
    edited November 2017

    TarheeMichelle,

    Hello 😊 I suspect you know this...

    Methadone beside its mu opioid agonist action, has some NMDA receptor antagonist action (other drugs such as Ketamine also act as NMDA receptor antagonist).

    Something to discuss with your team as part of your armamentarium might be Palexia ( tapentadol) - action also mu opioid receptor and some norepinephrine reuptake inhibition ( come in SR preps and doses vary from 50mg to 250 mg oral tablets)

    Neuropathy could be the result of the Taxol in the above but neuropathic cancer pain can result from cancer pressing on vertebra being the most obvious example. The initial mechanisms are slightly different but the drugs used are similar and yes it is very very hard to shift.

    For those on a fair bit of oxycodone - Targin (oxycontin/naloxone) might be an option - slower release so BD dosing allows for less through and potentially lower overall doses, the naloxone aims to slice of bit of the side effect profile although constipation remains a biggie.

    (()) to all,

    😊

  • wildplaces
    wildplaces Member Posts: 544
    edited November 2017

    Drugs per se are not bad.

    They have a bioavailability, uptake, clearance, mechanisms of action, side effects profile and contraindications to name of few.

    How, when, for what and in want combos - ie to act synergistically or prevent some of the side effects, they are prescribed is either bad or good ( ok 😱😨sometimes brilliant, occasionally bloody awful).

    I wrote this post because I think it matters to be pushing for attention to detail - make the doctors who prescribe pain relief be as precise as possible, and give you thought out options on treating side efects of medication, also give you options/plan of how to back of opioids when getting pain under control and how to push for other meds/techniques when pain is bad and opioids are not holding their ground. 😊


  • tarheelmichelle
    tarheelmichelle Member Posts: 248
    edited November 2017

    Thanks wildplaces. I’m grateful to you for sharing, for the benefit of others. You explained it so beautifully.

    I’ve asked Mods to consider allowing us to easily list our pain meds, even though many people here, even the metsters, don’t experience pain. It might help these discussions.

    I’m a rare patient who experiences odd side effects, so my cancer treatment and pain treatment is tricky. The pain doctor who administered my pain infusion (she only works with cancer patients) said she’s never seen a patient experience the dysphoria as I did. I have to remind myself of my unusual reactions. Just because my system “burns through” Oxy and I develop tolerance in a matter of months, and gives me terrible heebie-jeebies doesn’t mean it doesn’t work wonders for others.

    We naturally have love-hate relationships with our pain meds. I’ve been on pain medicine for 6 years throughout my Stage IV diagnosis. It’s been harder to manage than the cancer, because pain changes daily. I’m hoping others will continue to share here.

    You wrote: “I wrote this post because I think it matters to be pushing for attention to detail.” ABSOLUTELY — this matters for all pain patients. It’s so hard to be our own advocates as we fight dual enemies of pain and cancer, especially with fatigue,but effective pain management requires us to speak louder than a whisper.

  • aoibheann
    aoibheann Member Posts: 250
    edited November 2017

    Do many people take palexia? Is it better than fentanyl?

    I fell between two stools after my initial dx in that I met both the palliative care doctor and the pain doctor while in hospital. The pain doc px palexia and the palliative care doc px fentanyl and oxynorm. I went with the palliative care px but now I wonder if I should have stayed with palexia. I'm currently on 75mg fentanyl with 15mg oxynorm for breakthrough and 300mg lyrica. Pain is getting worse and doc wants to increase fentanyl. I wonder if I should go to the pain doc and try his treatments. He had scared me talking about morphine pumps. He also mentioned having great success with ketamine which also terrified me as I had associated it with horses and date rape!

    I'm going to a physio tomorrow who treats oncology patients to see if she can help with exercises to strengthen my muscles. I've lost three inches and I feel all compressed. Everything hurts and aches! I can't find a comfortable position in bed. Nurse said I should take oxynorm instead of sleeping pill. Am so confusedddd



  • tarheelmichelle
    tarheelmichelle Member Posts: 248
    edited November 2017

    Aoibbhean, what the he!!? Gosh I feel for you. I don’t know what palexia is, will have to look up US equivalent. ! Did your doctor mean an implanted pain pump? My doctor talked to me about it, and I think it’s a good idea in theory. But I’ve read about manufacturing flaws. Here in the USA, the government has threatened to shut down manufacturing plants for various reasons.So for now, my response is “Until I see better manufacturing practices, no.”

    I told my pain doctor that if she could find a stage IV breast cancer patient for me to talk to who is using the pain pump successfully, that I would consider it. I went on the website for the pain pump and they have an ambassador program for people who have pain pumps and are willing to talk about it but none of them are cancer patients and that really concerned me. When I brought it up to my pain doctor, she said that most people in pain aren’t Internet savvy; therefore they’re not willing to be on the Internet as ambassadors. I disagree with that, I think there are a lot of people online so the fact that I simply have not met a Stage IV breast cancer patient with the pain pump doesn’t give me a lot of confidence.

    Are you changing patches every 2 days? My doctor says most patients do, rather than 3 days.

    I’ve already written about Ketamine infusions. Like Gabapentin, it’s not perfect. As bad as my Ketamine infusion was, it did successfully reset my pain level and I’m back to low dose methadone.

  • wildplaces
    wildplaces Member Posts: 544
    edited November 2017

    Thank you TarheeMichelle

    😊 a couple of things:

    Aoibheann - the background of " pain" doctors and palliative doctors is different in terms of training. Traditionally, and I speak for Australia - most palliative care comes through general medicine and learns about pain management through that, as a component. The pain doctors unless they super specialise in cancer pain, will treat a variety of pain conditions including amputation and phantom pain, pain from degenerative disease, neuropathic pain from trauma and so on - they have more tricks in the bag for pain per se but unless they work with cancer specifically not as much insight/experience into longer term cancer issues.

    So if you see two - pick their brains, choose something that fits in with you at this point in time and be prepared to change if it does not work without thinking it failed - also keep a diary and know that you can return to a routine if side effects not too bad - it might work in different conditions.

    It's a matter of falling onto the right drugs mix for the right person for the specific pain complaint at that point in time.

    Just a bit of info on the above drugs that you may be able to bring up with your treating physician.

    2. Palexia is tapentadol.

    You could take it with oxynorm instead of the fentanyl...

    Or you could consider it in a small dose 50 SR -100 mg SR with the fentanyl patch and try and pull back a little on the breakthrough oxynorm.

    Ask your doctors and see if a possibility for you. 😊

    3. Ketamine also comes in an oral form - 50 mg - can be taken generally up to three times a day.

    Does not have to be taken everyday.

    The side effect profile in terms of dissoaciative problems may be less as there is some dose dependency.

    Finally - I think getting your sleep pattern right is a big part of long term pain management.

    The drugs that help with that are a litlle different and can also help with pain per se through some of their mechanisms

    I hope this helps...

    😊🌷


  • wildplaces
    wildplaces Member Posts: 544
    edited November 2017

    TarheeMichelle

    You have given me much food for thought.

    There is a thread discussion on the recent " Take the fright out of cancer" saga of BCO but recently the thread has taken a positive turn - Mods and BCO are asking for suggestions for future campaigns/education.

    I believe women feeling empowered to advocate for better thought out treatments across the board is a huge one. It is tough to keep finding that voice - that keeps wanting to say to your doctor - "before you tell me what you may said five times already today, take a big breath, look at ALL you know about me, think, and then talk - I will then listen.

    Havin pain treated promptly, effectively and with clarity of purpose is a human right. 😊