Pain From Diagnosed Cancer, Not From Treatment
I'm starting this to discuss breast cancer pain.
- Not mysterious pain that you think might be cancer.
- Not pain from mastectomies or other breast surgery, such as reconstruction or mammograms.
- But breast and metastatic bodily pain from cancer, particularly bone pain, and breast pain for those recently diagnosed.
So, tell me about your pain: what you feel, what helps alleviate it, and how you cope with managing cancer AND pain.
I am an ambassador for the U.S. Pain Foundation and will share what I've learned.
This is a safe space to share grief and agony. If it helps you, and I hope it does, write about your pain. Some people find mental relief addressing their pain as an entity. (Dear Pain: I'm tired of fighting you. Etc.)
Comments
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Hi TarheelMichelle, I was diagnosed with extensive bone mets on 3rd November, 2016. I have mets in every bone from my left femur to my skull, too numerous to count....there are stress fractures in eight ribs and in three parts of my spine...lumber and cervical. The pain has been with me since a year before my de novo diagnosis in mid October, 2016. At the beginning, after my bilateral mastectomy, the pain was so great that I was unable to move without help. I needed help to lie down, to sit up, to stand up, to use the toilet and to shower and dress. In other words, I was totally dependent. I have a history of reactions to most pain killers, which made it difficult for my oncologist to prescribe for me but, since surgery I have been using a Fentanyl patch, 25mcg per hour for 72 hours and changing it after each 72 hours, at first I used oxycodone but reacted badly to that (constipation and being too spaced out). Now, ten months later, I get by on Targin 10/5mgm twice daily, Tramadol 50mgm PRN and the Fentanyl patch. At rest and with my back fully supported, I feel comfortable and have no pain but after 30 minutes of activity I have to rest with my back supported again. I rest all morning in bed and in the afternoon I do small chores with rests in between. My oncologist prescribed Lyrica for me three weeks ago and it has improved my mobility but I have not noticed any change in the pain. Btw I have a very high pain threshold. I have been told by my oncologist that my mets are so extensive he would normally prescribed much higher doses of my analgesia but because I react so badly we use the lowest dose that gives just enough relief to give me quality of life.
My way of coping is to distract myself from my pain now, ten months later, although in the earlier months, I was consumed by it.
I hope this addresses your query somewhat. I'm happy to answer any questions.
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Thank you leapfrog! I wish we could add a separate pain introduction, as you did, to put at the bottom of our signature. Maybe I can think of some shorthand code, so we can quickly understand the other person's pain area and pain relief.
You have had unique pain challenges that I've never seen in anyone else. How do you keep your spirits up?
I have been on Fentanyl twice, for about 6 months at a time. My body quickly builds up a tolerance, so I have to rotate opiates. The patches here (not sure if they are the same as patches sold in Australia) are supposed to be for 72 hours, but that's never worked for me, only 48 hours for each patch. I think I was on 75 mcg, so yes, I'd say you have a high pain tolerance. ;-)
Can you tell me about skull mets? I don't have any mets in my femur or my skull. I was wondering if they are handled differently, since they are close to the brain.
I also find that distraction is helpful. I use crossword puzzles, Scrabble or Facebook to keep me occupied, particularly after I have taken breakthrough pain medicine.
I have had radiation in two places on my spine for pain alleviation. A side effect of the radiation was damage to my windpipe, so I can't do any aerobic exercise, because it's hard for me to catch my breath. I had just learned to run and was enjoying it, so I'm very bitter about no longer being able to run. I'm trying to get past it. My onc. has mentioned possibly radiating my left hip, but I'm hesitant because of my history. That's the area that hurts the most right now.
When I was first diagnosed with Stage IV in early 2012, no one warned me about building up a tolerance to pain meds, or needing a higher dose. I was quickly burning through my dose, then suffering from withdrawal ... every day. It was horrible. I'm thankful that I found a pain doctor who explains these things and now I can anticipate this and prepare for it.
I've been on each of these pain meds, in order: Oxycontin, Fentanyl, Morphine, Dilaudid, Oxycontin, Fentanyl, Methadone, Oxycontin.
Methadone was absolutely the best pain medicine, and it lasted a long time, I got almost 2 years out of it. Oxy messes up my breathing. I just learned about opiate resistance, which is when the body doesn't respond to opiates at all. The last time I was on Oxy., I was taking 30 mg 3x day. Right now, I'm taking 80 mg 3x a day with 20-30 mg for breakthrough. It's not helping the pain, and it hasn't since I started taking it. My doctor added 300 mg. of gabapentine 3x a day, yep 900 mg a day. I can't tell much difference, maybe my pain seems a little duller, but it's quite persistent. I've become frustrated with my present situation. My pain doctor is out on maternity leave, and the replacement, who is the medical director of the entire facility, encouraged me to "give it another week, and see if the gabapentin will work." I'm in too much pain for that. And my other pain doctor's office staff has been dragging its feet on making an appointment for me.
I'm trying to stay calm, but when I think about when it's my time to die, I want to make sure there are adequate pain supplies for me. This opiate intolerance has me a little scared, but I will just keep going, like I always do.
I hope others who have cancer pain will post a little about themselves, or a lot, like me.
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Oh TarheelMichelle, I wish I could reach across the ocean to hug you! I'm fortunate that, so far, I'm still coping on fairly low doses and that Fentanyl 25mcg is still effective, as are the other drugs. I'm aware that this could change but my way coping is not to worry about the future. I've been unable to leave the house for at least two years now....much longer, I think....the past few years are a blur of illness and pain now. And now that I'm on an Ibrance and Femara trial, I know that the limitations to my lifestyle will be much greater because I have been told I'll be taking this combo, or another if this stops working, for the rest of my life. I have Grade 3 neutropenia and have been told to avoid anywhere that people gather, which of course, is nearly everywhere! And I'll be on this regime for the rest of my life, as I said, so I've decided I might as well get used to it. This, of course, means no travel, no meals out, no shows, no parties...you get the gist. It also means no gardening, which I've always loved to do, because of the risk of a severe infection overwhelming my system suddenly.
So, to your question about how do I keep my spirits up...to start with I'm fortunate that my husband is supportive...he has his moments; he's a male, after all but in general, since my de novo diagnosis of extensive mets, the fright brought him up with a start and he spends more time with me now, so I see that as a plus! I have a gorgeous grown up son, who is very emotionally mature...I brought him up, after all! I put everything into teaching him to be strong during his childhood and it's paid off. I wish it didn't have to be this way but he's been my carer for several years and took over running the house when he saw what an enormous struggle it was for me two years ago. So, they tell me my only responsibility is to rest and get well, which I intend to do...get well, that is. Friends have been a bit disappointing and I know I'm not an orphan in this, but I do have one who is like a sister and we've been friends since our teens, a matter of forty plus years! Another friend is my hairdresser and she helps by coming to the house to do my hair and, if we feel like doing a crazy colour, we do. I'm lucky I'm on hormonal treatment and have kept more than half of my hair.
I'm an incorrigible optimist and that really helps. I live in the moment and I find joy in tiny things...a bird sitting on the fence when I'm sitting outside, the sun glittering on the leaves of a tree, watching a storm coming, watching the rain and being thankful I'm inside, warm and dry. This way of thinking doesn't just happen, I've worked at it. I've done mindfulness meditation and practised it until it has become a habit. I'm hopeless at craft but since I can't be physically active, which used to be my hobby, I'm working at improving my terrible knitting skills and doing some needle point. I use Facebook to keep in touch with friends and I've created a FB Like page where I post flowers, scenery and inspirational quotes...it keeps me happy and spreads that happiness to others, which I love doing. If I'm well enough I potter around the house doing some tidying and other simple chores.
Oh, re pain relief, I had five sessions of radiotherapy on my T7 and T8 where a particularly nasty tumour is very painful and causes pain to radiate around my shoulder blade and neck but it didn't help, unfortunately, and has caused pain in my sternum, where I have tumours and was radiated. I don't notice the tumours in my skull most of the time. I try not to think about them until I get a stabbing pain in the bone around my left eye, where I know I have more than one tumour. I feel that, at the moment, I'm over the worst of my pain. I'm totally aware that I could get bad news some time but worrying about that is futile so I don't do it. I hope this reply has been what you wanted from me.
You asked a question and received an essay! That's me, I'm afraid haha.
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Hi Guys,
Thanks for starting this thread and giving us a place to talk about pain etc.
I was diagnosed in 2009 with spine and rib mets. Fast forward to today and most of my spine has tumors as does my lumbar, pelvis and hips. I had radiation twice to thoracic spine and the tumors came back. I had spinal fusion to T-8-T-12 which was a 10 hour surgery and close to a year recovery. However, I would have been paralyzed. I just completed radiation to my hip and so far not much difference in pain. It's been 2 months. So in total I've had 5 radiation treatments, and surgery. I've been able to control my pain until recently. One of the tumors in my hip/femur is 8.4 cm and that nasty one is causing a lot of pain. So I take 20mg of Oxycontin every 12 hours and use Vicodin every 3-4 in between. I too have a high tolerance for pain and it sometimes drives my MO crazy because pain meds as a whole also don't seem to do much for me. I tried Fentanyl once and got very dizzy. Ronda, I will ask about methadone at my MO's visit on Thursday.
Leapfrog, I wish I had your optimism but I am more of a realist. Tell me, inform me and then I will go from there. I just had to miss going to NY to attend my son's PhD which greatly upset me. I was able to see it live streaming but not the same. I was in too much pain to make that trip. So right now, I'm more sad than anything, but will pick myself up and move forward. My goal was to be alive to see his PhD and I was able to see that for which I am grateful.
I see my neurosurgeon soon and will report back if he has any other ideas for pain etc. I have not tried gabapentin but may do that. I have shooting nerve pain in legs from spinal compression. What have you experienced with gabapentin and SE's?
Leapfrog...you have an MRI coming up right?
Linda
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Let's not censor ourselves. In our own households, perhaps we can't discuss our feelings fully. But here we can. Long essays are encouraged. There must be lurkers who will benefit /wave/ and I will read all messages at least twice. So write to your heart's content.LindaLou, Congrats on having a son at the Phd level. It must have been terribly disappointing not to be there at the ceremony. For me, and probably for you, part of the sadness is knowing how we used to be, strong and able. It helps me to have photos of events I've missed and even events I attended. Those memories are precious.
I wanted to ask you, LindaLou, you see your neurosurgeon for pain? Does he frequently manage pain for his patients? I am amazed at your low dose. Every time I ask my pain doctor, am I taking too much, she assures me that everyone is different and I am far from maxing out on opiates. All of that was before my recent pain outbreak. I just don't like taking 200-300 mg of Oxy especially when it's not helping.
Do we all have sons? My only child is a son, 19, he goes to a university about 30 minutes away. (I also have 2 stepsons from previous marriage and a 13-yr-old stepson from current marriage.) DS is often my caregiver, in addition to DH. DH has made disparaging remarks, such as "You shouldn't make your son your caregiver." I get his POV, DH is his stepfather, but my position is I'm not asking him to do anything I wouldn't have asked him to do when I was healthy. Things like, running upstairs to grab an item, to save me a trip, or taking out the trash.
No side effects w/gabapentin. I feel more clearheaded, and the hip pain seems less sharp. I often have terrible side effects, so I'm glad none with gab. don't feel like the gab. is helping my pain. I'm broken hearted that we all have undergone radiation for pain relief with little or no success.
I've had skin issues with Femara, and I know Oxy must aggravate it, since Oxy releases histamines that make my skin itch and burn. My skin, all over, feels like sand paper, it flakes off all over. When I wear black it looks terrible. It only adds to the intimacy issues with my husband.
Leapfrog, gardening gives me a lift, too. Do you have indoor plants you can care for, without too much energy? I only have a small plot beside my patio, and containers on my front porch. Even just watering them in the evening, and filling bird feeders, brings me joy. I have a plant whose seeds originated from Mount Vernon, the Home of our first president George Washington.
I try to be optimistic; it's my nature. I don't think it's possible to be a realist and an optimist; our situations are just too dire from a realistic perspective. I think both realists and optimists have to be brave
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My neurosurgeon primarily sees me to keep tabs on my rods and screws. I have 3 screws that bump out in my back right where my bra snaps so it is annoying! He will address pain some but for the most part he leaves that up to my MO. However, since I'm having so much pain that is not responding to radiation, he is being consulted as to whether or not there is a procedure he can do to help with that. I may see him next week, not sure. I see MO on Thursday and will find out more then.
My skin itches on Oxy too.
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Update: I have displaced and fractured a rib and in addition the MRI showed so much cancer progression so I'm off Ibrance. My MO is meeting with a researcher who only works with breast mets today. They will confer and come up with a plan for me. I will let you know what they decide later next week. I told them my goal was less pain or no pain. Unfortunately the rib that fractured has cancer in it so it will not heal well. I'm in a lot of pain.MO is talking chemo. Ronda, how was Afinitor?
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Hi ladies, hope you don't mind if I join you. I've been experiencing pain at the top of my lumpectomy breast and above, a dull aching pain, for a few months now and ive just been diagnosed with a 4cm bone met in my 3rd rib. This is the only met I have.
In the past weeks the pain has changed. Its still in those places but now also in my back & in only 1 spot under my sholderblade. Its agony and feels like someone has a hot poker in there, like a burny feel. Im at the start of the mets journey and am waiting to start radiation next week so I hope this helps. This new pain has come on quickly and is stopping me in my tracks. Im only on panadol and panadeine forte and still working fulltime just trying to get through everyday.
Does anyone have similar pain?
Thanks for listening,
Julie
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Julie, Are you having radiation on rib 3? I have mets on rib 2 & 3 and yes it feels like a hot poker. I've had radiation twice there and the lesions have come back but I did get much pain relief for awhile. What is your radiation plan? Talk to your MO about the pain to address that while you are receiving radiation.
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Welcome Julie. We're here to hear you. I'm sorry about your mets. You had your lumpectomy in 2011? If so, that is good that you only have one bone affected at this time. It's important that your pain is managed, so speak up if you are hurting.
LindaLou, I'm sorry the Ibrance didn't work and sorry the failure is so painful. Afinitor kept my cancer from progressing; I just couldn't stand the side effects. Many drugs from cancer treatment to opiates cause my skin to redden, develop rashes, and just flake and peel, making my skin hypersensitive. Nothing seems to help. Some people on the discussion boards say that different brands of letrozole cause fewer side effects, but with newer cancer meds like Afinitor, I don't have a choice.
The 300x3 gabapentin was changing my moods like steroids do. I was angry, paranoid and not just weepy, but loud sobbing. Enough. Maybe it was helping my opiates work better but I can't take all that medicine or all those emotions. I'm tapering off. Hoping I can find something else to address my bone pain.
For the 1st time, I'm totally disappointed in Sloan-Kettering. I've been emailing and calling them for 3 weeks to get an appointment to see a pain doctor during the time I'm there. (I visit 4x a year for PET scans and consult.) Each time, I tell them, this isn't a need for a casual visit; I'm in acute pain and need to see someone right away. Three days ago, a scheduler told me he would make sure I had an appt. Haven't heard a word since. I'm in terrible pain today. My husband is training for an Ironman so he's gone 8 hours today on a 100+ mile bike ride. I wish I could ride my bike in a parking lot. I hate how pain keeps me apart from things I love.
Wishing pain-free days for all of us.
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Ronda, I get very weird on steroids as well, and can not take them. I wonder if Gab wouldn't do the same thing to me as it did to you. Are you still on Afinitor? Sorry you are getting the runaround to see a pain doc and that you are in so much pain. My center has a pain doc but he really didn't have any more suggestions for me than my MO did. I cut back on my pain meds today because of the constipation which I just can't seem to avoid no matter what I do. Sunny and cool here today so I was able to sit outside for awhile. My husband is out playing golf. Wouldn't it be great to have even one day pain free? I'm going to ask about Methadone.
Leapfrog, what do you take for pain?
Linda
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Hi ladies, just adding my voice to the conversation. I'm sorry to hear that you're in acute pain, TarheelMichelle, and I hope that you get news of an appt with the pain doctor soon. Julie, have you had a ct and mri?
My story starts when I was diagnosed de nova with stage 4 bc in aug 2012 after a year of increasingly bad back pain. It turned out that I have mets everywhere, from my hips to my skull. There was a tumor on my t4 in danger of causing spinal compression which was/is extremely painful and I was hospitalised instantly, and had 15 rounds of radiation. The pain was not relieved. Then I had an op to put a pin in my right humerus as that bone was severely eroded. My ribs were broken during the operation as my bones were like swiss cheese. I was in severe pain. Following that operation I had a further series of 15 radiation treatments to my lumber spine. Several of my vertebrae are eroded and I have three compression fractures in my spine. I was then referred to a pain doctor and had three nerve block procedures. There was a cross-over in the hospital between the palliative care doctor and the pain doctor, I no longer recall who prescribed what. Suffice to say I was prescribed lidocaine patches, difene, paracetamol, tramadol, lyrica and oxynorm. The pain persisted. I had terrible problems with constipation. I got blinding headaches with nausea and vomiting. Onc. thought skull mets had gone into my brain and I had a lumbar puncture and more scans. Thank god it hadn't gone to my brain. Pain continued. My stomache reacted against the difene and I was put on fentanyl patches. I fell and broke my nose and my pelvis. More pain. I had 15 rounds of radiation to my cervical spine - C5 & C6 which has left me feeling like my head is too heavy for my neck.. Then I developed lymphoedema in my right arm which took months to diagnose;
So today, for pain, I am on a 75mg patch of Fentanyl every 72 hours, 150mg lyrica twice a day, 15mg oxynorm for breakthrough pain, paracetemol as needed. I am uncomfortable nearly all the time,in pain some of the time. The palliative care team want to increase my fentanyl and oxynorm px but I am concerned about increasing my levels of addiction and reducing potential pain relief. Also I am unable to differentiate between bone pain, nerve pain, muscle pain, referred pain... My lymphoedema arm and side really bother me and there seems to be little I can do about it. My back and shoulder are painful, my ribs ache, my arm feels stiff and like a sausage bursting out of a too tight casing, my side hurts and though I try to get in a walk most days I am inactive the rest of the day, I still waken with bad headaches from time to time. Do any of you guys get literally a pain in the ass from all this sitting around? Although I have two mattress toppers on my bed it never feels soft enough. I can't lie on my side as that hurts. It's so frustrating. I am a moan a minute. Still it feels good to moan. I wouldn't dream of saying as much to my family
I was a healthy, active woman before all this. I enjoyed hill walking with my friends once or twice a week, loved gardening, was in an art group, worked part time. It's like my life suddenly took a nosedive off a cliff. Don't get me wrong - I am glad to still be here but it's not the life I'd planned.
Hope you're all having a comfortable week-end
Hugs xx
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OMG Aiobheann, I can't complain at all !!!
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Aiobheann, I'm so glad you are here. Your story is gigantic. I'm going to read it carefully a few more times before I respond. I hate that we were once such vibrant active gals, restricted now.
I shake my head at "outsiders" who recommend fiber for constipation. Of course, for those of us on opiates, fiber does nothing. Opiates make our system lazy. Even senna and colace is useless. Miralax is the only thing I can depend on. I have to take a triple dose every day (3 capfuls.)
Lindalou I'm on Femara, no more Afinitor. You are right about Gabapentin and its similarity to steroids. As I tapered off, the pain returned. So I kept on it. Instead of 300 mg 3x, I'm doing 100 mg at breakfast and lunch and 200 mg at bedtime.
A very apologetic appointment scheduler got me in to see a pain doctor this week. I'll have my PET scan tomorrow, see my oncologist Thursday then pain doctor.
I realize now that when my body was showing signs of opiate ineffectiveness, it was time to look for higher level care. I adore my local Hospice/Palliative care center, where I see a doctor for pain management. But that's not a place that can handle a complex issue. They tried to help, suggesting a referral to a specialized pain clinic. But I was in the throes of withdrawal and Gabapentin grumpiness. (It's terrible feeling withdrawal when you absolutely do not want any more pain medicine.) I will get that referral now, to my local pain clinic, a then ask the pain doctor Thursday what she recommends. I'm lucky to have a nationally known pain clinic in my city. Didn't like going there for routine pain meds. They specialize in difficult pain.
It's almost 3 am. Bad insomnia for 2 nights. Can't take my usual Valium. Was warned not to while on Gab. Need sleep.
Rest, sweet dreams and painfree nights are what I'm wishing for all of you.
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Hi Julie, of course you can complain!! I regret not complaining when I initially had back pain. If I had, perhaps things wouldn't have progressed as much as they had. And remember everything is relative. Your pain is very real and it sounds like you need stronger pain killers for the present. However, I assume, the hope is that radiation will get rid of your pain. It has worked for many people, even in some instances killing off the mets. Still it is difficult working full time and being in pain. Hope you get good results!
Hi Ronda, sorry to hear that you can't sleep. I hate those wakeful hours during the night, all sorts of unwanted thoughts buzzing about. Can you take stilnocht or even xanax to help? I hope the pain doctor has some good suggestions for dealing with your pain. I am most interested to hear what he/she comes up with.
Hugs xx
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Aiobheann, I truly can't imagine the amount of pain you are in and for such a long time. You are a perfect example of strength and fortitude.
I've had bone mets for 8 years but for the most part it has been manageable until now. The nearest pain/palliative care center is 2 hours away.
I may start the Fentanyl patch soon as oral pain killers are playing havoc with my stomach and acid relfux. What have you noticed to be the greatest side effects? I know others have had success with Lyrica. Again, how have you done with that? Anyone else chime in?
Ronda, I too don't sleep well and have been taking Ambien for a long time. It helps some. Tell me more about Methadone.....Good luck with your PET.
Julie, Radiation should give you some relief. I got relief for a few years from rads on my spine and ribs. Not so much this time from rads in my hip, but I do have a large lesion(s) there.
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LindaLou Besides, constipatiom, worst side effect with pain meds is that horrible feeling when the meds wear off, that feeling like you have the flu and are getting electrocuted. Aka heebie jeebies. Methadone gave me the least amount of that withdrawal feeling and the most complete pain relief.
The Oxy/gabapentin combo is really screwing with my memory. I remembered tonight that I have melatonin which helps with my sleep. More later. Scan day wore me out.
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Im in tears reading these. I wish I could give you ladies a hug. This thread drew me in because pain was one of symptoms that lead to my diagnosis. I was a caregiver for both of my parents as they fought end stage colon cancer and acute leukemia. I saw their pain and I know what I'm feeling is nothing compared to your battles. My pain has been a great frustration for me though. I had my primary care physician, a physician assistant, the technician who did my standard mammogram and a lot of articles on the Internet tell me that breast cancer typically doesn't cause pain and wouldn't be a first symptom. That I just turned 41 so I'm young it's probably something else. Mine sure did hurt. I've had pain deep in my breast near the chest wall that radiated out to my arm and in my back under my shoulder blade. I have breast cancer in my family and I was blown off that it could be breast cancer pain when I asked about it when it first started in January. Even when I had nipple discharge and stinging pain in my nipple that started at the end of June my pcp put me on antibiotics and thought it was an infection. She did send me for a mammogram just to make sure once it hadn't cleared up and was turning bloody by August. Finally, once my 2 biopsies came back cancerous my breast surgeon told me it definitely could be breast cancer related. I have extensive DCIS from 11 o clock to 4 o clock. My Dr said with me having large breasts with many lesions extending the entire length of my duct from the glands to the Nipple she definitely thought it was Breast cancer related pain. I'm never going to not listen to my body again. I'm also getting a new pcp and I wish every article would list pain as a possible first symptom. Breast cancer CAN hurt. I fear there are other women out there ignoring their pain. Sending all of you ladies love and light!
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Doglover, I am so sorry to read your story. It's incredible that your pcp ignored your symptoms for so long esp when there was bc in your family. Hope your pain is being addressed now and that you're feeling better.
I struggled with drowsiness each time my dosage in both fentanyl and lyrica was increased but after a few weeks I was ok. I'm still able to drive TG. Constipation is another fun side effect. I used to take industrial quantities of miralex but I have learnt that eating a kiwi and a satsuma first thing every morning works for me, together with my daily americano and dark chocolate (much nicer than miralex!). My memory is shot. If I forget to change my patch or if it inadvertantly falls off without my being aware of it, I have withdrawal symptoms - but that's a rare event.
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Hi ladies! Hope you don't mind if I chime in. Does numbness count as pain? My entire leg.. from hip to toe is about 80% numb.
My story starts at the beginning of this year when I noticed my toes were numb. I mentioned it to my PCP who was convinced it was a B12 deficiency. She gave me exercises to do and sent me on my way. About 6 weeks later I noticed the numbness had started coming up my legs. So again, I returned to my PCP. This time, still convinced it was my B12, ordered bloodwork. Of course it came back ok.
I felt like I was getting the brush off from her so I emailed my MO. A few ago a bottle of tamoxifen gave me weird tingling in my heels. I emailed him to ask if he thought the numbness could be related to the tamoxifen. He asked me to come off of it for a week and see if it improved. It didn't. I went in to see him and he ordered an MRI. They found a tumor on my T10.
MRI was on a Tuesday.. Thursday morning (same week) I received a call from a nurse that I needed to be admitted to the hospital that night for emergency spinal surgery the next day. The way the tumor was growing around my spinal column, I was days away from paralysis.
That was in May.. it's now Sept and I still don't feel any where near healed. I've finally just mastered going down stairs. It's completely frustrating. I just want to have full feeling in my leg. Is that really too much to ask?
For pain, I'm on 600 mg gabapentin 3x day and morphine pills. I honestly can't say if it's working or if the leg is improving. It's numb 24x7. I still have back pain that I can best describe as it being a corset that someone keeps pulling tighter and tighter.
Let's not even talk about sleeping. I haven't had a comfortable night's rest since this mess started. Sorry to ramble on.. feels good to talk to people who get it.
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yes, finallyoverit, we get it. /gentle hug/ If you didn't have numbness, you might have pain, and in some ways numbness is worse. The loss of sensation can be dangerous.
You are on a mighty dose of Gabapentin. You could try moving down a teensy bit on your opiates to see if the numbness is worse. I'm concerned for all of us that the pain medicine we take can mask other issues that pop up. In your situation, your numbness may keep you from feeling pain.
Doglover, welcome. Gold star ⭐️ to you for your follow-up, and hoping healthier days are ahead. You're a prime example of DCIS/Stage 0 being much more complicated than implied by the staging.
Aohibheann, I require Miralax 3x day but I may try your tricks to see if they help. I started Gabapentin a couple of weeks ago and that seems to help the issue of no-go.
Wishing everyone a painfree day. I saw a pain doctor at Sloan-Kettering about my loss of opiate effectiveness. I'm going to try Ketamine therapy. Will share more about that later. Waiting to fly home.
If anyone lurking has any experience with ketamine to restore opiate sensitivity, please share.
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finallyoverit, I too have had spinal fusion surgery, three years ago. My tumors go from T-4- to S-1 but my rods and screws are T-8-T-12. I have numbness in my leg as well, and it is a bit better but I'm 3 years out. However, I will say it took me over a year to feel some pain relief in the thoracic area and you may well feel that tightness go away after time. The tightness may also be muscle spasms which are nasty. That took most of a year to get better. I guess we both missed the paralysis bullet. My surgery was 10 hours long and neurosurgeon said I was within a week of being paralyzed. So hang in there, you may still get relief. This surgery can be a long recovery.
Ronda, I'm on Miralax 3 times a day too. Tell us more about the Ketamine therapy when you can.
Question for those on Gab or Lyrica. Did you get mood changes? Agitation. aggressiveness, suicidal thoughts? I had all of those on Dexamethasone and can not ever take steroids again. The RX notes these possible side effects and I wanted to hear what you all have experienced.
Doglover, you bring up a good point. What treatment are you on now?
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Ronda,
I've no experience with ketamine but when I started on this journey 5 years ago the pain doctor I consulted wanted me to take ketamine so I will be very interested to see how you fare on it. I didn't have suicidal ideation on lyrica, and though I do feel agitated (a lot) I don't think it is caused by lyrica. Actually a friend of my mine who suffered a period of anxiety was px lyrica and found it helped enormously with her symptoms!
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@Lindalou . I'm fused from T7-T12. Since it was such an emergent 7.5 hour surgery, I had no idea it was going to take me this long to recover. Haven't really even processed the Stage IV yet since I'm dealing with surgery stuff. I'm not in denial about my progression.. I just chose to focus on 1 issue at a time. Right now, the numb leg and aching back take precedence over the stage IV.
Edited to add: I have not experienced any of those symptoms and I've been on gabapentin since May.
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Steroids mess with my mind and my weight. Even the teeniest dose of dexamethasone. I avoid it. I wasn't expecting gabapentin to affect me that way. It WAS helping my pain, when taken with Oxy. Right now, just as a stopgap measure, I'm taking 100 mg of gab morning and afternoon, and 200 mg in the evening. My moods have been better with decreased dose. However, I seem to retain water on it. None of my rings fit, not even my engagement. Hoping now that I'm off AI, I can get that 30 lb. weight gain off that has piled on.
I'll share every detail of my ketamine infusion once I do it. Here's what I have learned so far. Ketamine is an anesthetic, used on humans and animals. Somehow they found out it restores opiate sensitivity in SOME people. It usually requires an infusion that lasts a couple of hours, but only a small amount of the ketamine, compared to anesthesia. Some patients have to repeat this every few months, for opiate sensitivity. I'm fortunate to have a pretty well-known pain clinic in my city. That's where ketamine infusions are done; not at most oncology offices. It requires an anesthesiologist's knowledge of ketamine. Infusions are used for depression as well. The pain specialist at MSKCC said infusions are not considered experimental or anything like that.
It takes awhile for referrals and paperwork. I'm waiting on ketamine infusion for pain and new cancer med, Ibrance. Nurse says maybe next week for infusion.
Pain specialist also mentioned Lyrica and intrathecal pain pumps for pain control.
Thanks for the camaraderie and sharing, ladies. DH is two hours away at a bike race. DS at college with rush week, and my BFF in the next town can visit -- her car is at repair shop. They often stay with me when DH is away. Sure helps the lonely feeling to read your posts.
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Lindalou - no treatment yet. My surgeon has said mastectomy of my left breast is only option since I have so much DCIS in such a large area of my breast. I won't know about radiation until my lymph nodes are biopsied. I'm also still waiting on genetic testing to come back. Could end up with bilateral mastectomy depending on those results.
I see a plastic surgeon Monday. At this point we're planning on the uni with immediate reconstruction, probably Diep flap, and a reduction on the right side.
I hope you've all had a pain free day today. ((hugs))
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Ladies, I'm on Morphine but it makes me very nauseated even with Zofran. MO may start me on a chemo for the pain next week. As soon as I know what that is, I'll post. Anybody else have tricks for the Morphine nausea or have a chemo to help? Ibrance didn't work for me.
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oh LindaLou, I'm sorry about the Ibrance not working. I don't remember being nauseated from morphine but you may be on a higher dose. Here are things that have helped me: Peppermint Altoids, sometimes holding 3 in my mouth; maybe peppermint essential oil would help; Pepcid or Tums or liquid antacid; sitting up in bed rather than lying down; ginger-I had to try different forms to find the right one-there's ginger candy, gingdr chews, ginger ale. Sometimes flat room temp ginger ale helps; sometimes ginger chews flavored with something else; sometimes fresh ginger grated into iced tea.
If Zofran isn't working let your doc know.
Let us know how you are doing.
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Ronda, Thanks for the tips. Morphine doesn't like me. Icky. I may go back to OXY. How are you feeling?
Have any of you had chemo to primarily help with pain and did it help with the pain? I have a lot of progression and MO is considering chemo to help with the pain.
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No chemo for me, ever. Though the Ibrance came shipped in a plastic bag marked chemo. I'm hanging on; thanks for asking, LindaLou. I'm getting my second dose of Faslodex this Thursday and will see the pain specialist Friday. I hope I can get the infusion to restore my response to opiates soon after. Most days pain 4-6.
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