Pain medication

General
1

Hi everyone.

I was wondering how everybody deals with the pain that accomplishes so many of us MM patients. My pain started in my upper back where I had three tumors on my spine and many lesions throughout my spine and ribs. The worst of the pain has gone with chemo, Zometa and two transplants, but I still get pretty bad back pain. I can not work on my feet for more than three hours, then it is time on the couch leaning back. I am trying to strengthen my back by doing and teaching yoga three times a week and walk a couple of miles two miles three times a week. I am allowed to have oxicodone 10 mg twice a day but try to only take it 3 to 5 times a week one time a day. What things do you use to ease your bone or muscle pain and has anybody had good results with accupuncture?
Tomorrow is my 100 days since my second transplant and I am excited. Got through it without seeing the ER like I did twice after the first transplant. MM not gone but lowest it has ever been and weight and energy pretty much back where it was. On top of that I have learned alot like my wonderful friend Rodney about here and appreciate life and people to the fullest. Carpe Diem every day and find the silver lining in everything my friends, even the MM, if you look hard enough you can find it. And when worry, pain or fear grabs it… Let it go, like the song in Frozen says :>)

Love and prayers going out to all my MM family

2

Has anyone had a drug reaction to Pomalyist or Revlimid (belong to same family)? Mine was only the entire head, red, burning, itching to death w/ rash from ear to ear along hairline. I had this w/ both chemo capsules. Dr.'s gonna try lower dosage of Revlimid. Receive Carfilzomib IV 2x week but not doing anything by itself also receive 10 mg. Dexamethasone w/ Carfilzomib. Don't sleep on days take Dexamethasone.

Like to hear from anyone that's had a reaction & what you did.

Madison

3

You are the best........every day is a gift, especially when you have friends like you. I stay sooo busy that I don't have time to hurt, but when it does I find an electric blanket and our little dog helps it go away (my back also).

rodney

4

It is so great to hear that you didn't have any visits to the ER. I am so glad the MM is at it lowest. That is wonderful news. About the pain you may want to ask your Doctor about a low dose Fentanyl Patch. They give you 24 hour pain relief. The patches are changed every 72 hours. They are used to manage moderate to severe chronic pain. It is nice to hear that your energy is also getting back to where it was. Keep the good news coming it is so helpful. Juli

5

I think you and I have a lot in common. We both want the pain to go away, but greatly fear addiction. I'm currently taking Hydrocodone and acetaminophen. It's not working as well as I would like, but I'm afraid to up the dosage without consulting with the Doctor first. I've been thinking about asking for Oxycodone, but the addiction fear keeps me from asking. Do you feel that you are avoiding getting hooked by taking it sparingly? It sounds reasonable to me.

I'm so glad you are feeling better, and have your energy back.

Hugs,

Dean

6

Dean,

I was on Oxycodone 3 wks. in hospital around clock. Came home only took one at bedtime for 3 months had no problem dropping down to one, then became allergic to it, couldn't take anymore.

If you have pain, you won't become addicted. It's when you take meds to just feel good & you're having no pain. It goes straight to brain, that's where addiction sets in, w/ pain it attacks pain endorphins instead of going to brain. Got to go to brain to become addicted.

That's why I'm afraid of Fentanyl Patches constantly leaving on when there is no pain. You have to be so careful,danger of forgetting to take old patch off & dangerous to add another pain med. Your lights would go out most likely.

p.s I am a Nurse

Madison

7

Please don't apply heating pads or electric blankets to pain sites if you have tumors at that site. Heat draws blood supply to site therefore feeding tumor. What I was told while in Vanderbilt Hospital, Nashville, TN. So far, I've found that hospital to top them all, especially U.OF M in Ann Arbor, MI. The worst on my list.

Vanderbilt straightened out their mess. I went there 1 1/2 yrs. in wheel chair, couldn't walk. They told me, I was in partial remission did no treatment except bone feeder once a month. I begged for MRI. Guess what, Vanderbilt found shattered tail bone, rt. hip,malignant tumor literally growing out of sacral bone pushing on nerves in rt. leg, year prior Uof M said, it was water filled cyst of no importance. Anyone from Mi read this before going to Uof M They also don't listen to you. I have a daughter in Nashville, it was her idea for 2nd. opion. That Dr. called them gave them a piece of his mind. In 3 months they had me walking without w/c or walker. I almost died. They even put me in a induced coma to find pain med. that would work. That was oxicodone. I was praying to die, the pain was so bad. Radiation & 3 chemos started immed.

Had stem cell transplant 6 months after, did wonderful from that went in remission 2yrs. Got stomach Cancer yr. ago brought MM back out full blast back on chemo. 75% stomach was removed, chemo & 25 doses radiation. I don't know why I'm still here. I've been through it w/ Grace of God & prayer, I live alone, 73, do all my housework, drive, cook, yard work. Am I doing all right? Take no pain pills at all now, don't want to deal w/ the constipation from them.

Madison

Madison

8



Madison said:

Dean,

I was on Oxycodone 3 wks. in hospital around clock. Came home only took one at bedtime for 3 months had no problem dropping down to one, then became allergic to it, couldn't take anymore.

If you have pain, you won't become addicted. It's when you take meds to just feel good & you're having no pain. It goes straight to brain, that's where addiction sets in, w/ pain it attacks pain endorphins instead of going to brain. Got to go to brain to become addicted.

That's why I'm afraid of Fentanyl Patches constantly leaving on when there is no pain. You have to be so careful,danger of forgetting to take old patch off & dangerous to add another pain med. Your lights would go out most likely.

p.s I am a Nurse

Madison

Madison, You're my new Hero. I love your spirit, and your heart. In some ways I wish I were more like you.

However, when I had the bone marrow biopsy I first thought I was going to die, then I got scared that I wouldn't die. Needless to say I'm not cut out to endure pain and suffering. The fear of addiction is becoming marginalized the more I accept the fact that MM is a terminal cancer.

I just wonder now if treating it as a chronic illness, as opposed to a terminal illness truly adds to your life, or just lengthens the pain and suffering. I'm in the early stages of this disease, but my inclination is to refuse aggressive cancer treatment, but agree to fight symptoms like anemia. I just don't think that I'm physically, mentally, emotionally, or spiritually strong enough to withstand Chemotherapy and/or Radiation. I don't fear death, but I do fear dying.

Madison, I'm cheering you on, and using you as a positive example. Thank You.

Hugs,

Dean

9

Dean, 1st. quit looking at it as terminal, with all the research going on. We don't know what tomorrow may bring. My faith in God & prayer, my church friends from TN. to MI praying for me. My Dr. has become a believer from watching how I pull through. I know, exactly how you feel, you're scared. You start planning things, getting your affairs in order. We should do that anyway. I'm going into my 5th. year ( I ask myself) is my time running out? I was in 3rd. stage when diagnosised had lesions, tumors every where. You will withstand radiation (radiation got rid of my back pain) I had broken bones under the tumors. They kept putting me in P.T. saying I had Arthritis finally I said, no more I want complete blood work up & bone marrow biopsy. We have to start changing your entire attitude. Get rid of negative thinking as of right now. Always postive thoughts, if it's God's will you will get through this ( he needs some help from you) You want treatment it gets rid of pain. Right now, I have no pain. They had to add Revlimid to Carfilzomib cause Carfilzomib wasn't killing cancer cells by itself -Guess what I'm allergic to Revlimid. They're gonna lower dose in 1/2. I'm in relapse. Stomach deal brought it back. You want all help you can get w/ pain- look at it this way- what do you have to lose? It's not going away by itself, they might find a cure any time. Can I ask how old you are Dean? I'm praying hard for you & I'll put you on the prayer list.

Remember, we can't have no negative thinking! that's where it all starts. Please, keep me informed how you're doing daily love to hear from you. I'm on no pain pills now, try to walk little each day just don't over do it.

Madison

OrdinaryAmerican said:



Madison said:

Dean,

I was on Oxycodone 3 wks. in hospital around clock. Came home only took one at bedtime for 3 months had no problem dropping down to one, then became allergic to it, couldn't take anymore.

If you have pain, you won't become addicted. It's when you take meds to just feel good & you're having no pain. It goes straight to brain, that's where addiction sets in, w/ pain it attacks pain endorphins instead of going to brain. Got to go to brain to become addicted.

That's why I'm afraid of Fentanyl Patches constantly leaving on when there is no pain. You have to be so careful,danger of forgetting to take old patch off & dangerous to add another pain med. Your lights would go out most likely.

p.s I am a Nurse

Madison

Madison, You're my new Hero. I love your spirit, and your heart. In some ways I wish I were more like you.

However, when I had the bone marrow biopsy I first thought I was going to die, then I got scared that I wouldn't die. Needless to say I'm not cut out to endure pain and suffering. The fear of addiction is becoming marginalized the more I accept the fact that MM is a terminal cancer.

I just wonder now if treating it as a chronic illness, as opposed to a terminal illness truly adds to your life, or just lengthens the pain and suffering. I'm in the early stages of this disease, but my inclination is to refuse aggressive cancer treatment, but agree to fight symptoms like anemia. I just don't think that I'm physically, mentally, emotionally, or spiritually strong enough to withstand Chemotherapy and/or Radiation. I don't fear death, but I do fear dying.

Madison, I'm cheering you on, and using you as a positive example. Thank You.

Hugs,

Dean

10

Hi Madison,

I'm 69 years old as of last month. I don't mean to sound as if I'm throwing in the towel ... but I do keep it in one hand.

I have a big appointment with my Oncologist on Tuesday. By now he has the results of three MRI scans. If that doesn't tell him something, I'll be getting a new Doctor. I anticipate he will have at least the rudimentary outline of a treatment plan. If it includes Chemo and Radiation I will think about it. If it doesn't include either of those two, I'll likely give it a try, immediately.

I don't have children to look after. I doubt if I will win a Nobel Prize, or the Lottery. My affairs are in order, including a pre-paid cremation. As you can see, my amount of time left is far less important than my quality of time left. I'll write on Tuesday. Hugs, Dean

11

Happy Easter Dean,

it's a beautiful day out, the sun shinning. I think, later I will go to the" Healing Gardens" at local Cancer Center & walk a little. That always seems to help me. I'm taking few days off from my Revlamid, had severe allergic reaction. Insur. won't pay for new refill of lower dose for another 30 days. Don't blame them at$10,000 a script. That's awful isn't it?

Remember, when you get results of MRI'S I myself, had lesions all down my spine & both shoulders, even on my skull covering. Radiation & chemo will take care of them. That's why you need treatment. The pain immediately goes away. Radiation alone really helped my back pain & shrunk my tumor at T4-5 It was totally gone.

I forgot to give my age, I think, maybe I did. I really have chemo brain I'm 73.I was a Nurse back in the day, worked at St. Joseph Mercy Hosp. worked Cancer 5yrs. Got so depressed left Nursing in 1985.During that time, lost my Mom to Cancer, 41 yr. old brother to lung cancer(only full brother) lost 1/2 brother (same Mom different Dad) 2yrs. ago at 63 to Multi Myeloma. He didn't even know he had it until 3 months prior. He was exposed to Agent Orange during Vietnam war. I wasn't, but we were raised same household, drank well water from a well. I think, that was maybe it.

i detect little depression, which certainly is understandable.That's when I go to my higher power because I have no family support in Mi what-so-ever. My family in Tn.wonderful but that's no help in Mi. I have daughter lives here & 2 grandchildren. I never see neither 3, my daughter, can't deal w/ sickly people or likes to be around them,she says. I have cause to feel sorry for myself & get depressed but I'm not gonna let them get me down. I turn to my higher power, they'll have to answer one day for their actions. With all my church friends, I have an over abundance of good friends. I was afraid, to go to Church today because my white count being so low (1.2 )kicks out the immune system. Normal starts (3.5) Chemo I'm on lowers white counts.Have to be careful can catch anything.

I didn't mean to write a book. Dean, I believe, God takes us to nothing that we can't get through. (If he takes you to it, he can get you through it) There's reason for everything that happens to us, I believe!

You're in my prayers & I hope you're spending Easter w/ family or friends. Have a wonderful day. I know, you're gonna do just fine.

Madison

Dean,what about your family support, I hope you have better than I have

12

Hey Madison,

Thanks for the book. I needed it. It reminds me that although I've taken care of my affairs for after my death --- I now need to work on my affairs for living, at peace, until my death.

Family: I was adopted at 2 wks. by a 45 yr. old man (Dad) who was married to a 24 yr. old hottie. When she disappeared, I lived with friends and relatives until he re-married at my age of about 8. My new(ist) mom had two grown daughters. One remaining "sister" lives about 150 miles from here, and we talk about every other month.

I was married for 28 yrs. had no children, divorced...re-married current wife just turned 90, she had 6 children. Go Figure.

I now intend to put greater effort into making a conscious contact with my higher power. Thanks for the tip.

Hugs,

Dean

13

Hi Madisson and Dean,

Wow, I have been reading your posts and thought I had commented but it did not go through. I have a lot in common with the both of you. Dean, I have been where you are. I was diagnosed in November 2012 at the age of 44 with a 7 year old girl. It took them 6 months of excruciating pain that could not be explained in my back and many ER visists. By the time they found out I had three tumors on my spine, one inside my spinal cord almost paralyzing me and many lesions in my skull, spine (pieces missing and ribs. I came from a mindset of ulternative medicine and doctors and chemo etc being bad, but even my naturopath said I had no choice. I was in a wheel chair and could not even roll over in bed. I was so afraid of the pain and to live yet just as scared of dying and leaving my daughter without a mother (we are very close) Like Madisson my family pretty much dropped me like a bad habbit. My mother is a christian scientist and does not believe I am sick yet believes it is my thoughts that caused it. I kinda thought maybe this was true. I did immediate radiation to get rid of the tumor that was theatening to paralize me. I stretched one morning and broke a rib. I was in bad shape. The first two rounds of chemo almost did me in, fevers, weightloss, nausea, pain, I could not even cough and sneeze without excrutiating pain even with pain meds. Then..... after two rounds something clicked in my mind and I realized I had to embrace the chemo if I was to survive and not look at it as bad anymore. Almost overnight I started to feel better. I remember the day I sneezed and it no longer hurt. I too became very spiritual and started meditating and praying every day. I slowly got my strength back and started walking around the block (like a 90 year old, but I did it) I was still soooo very scared. Steroids did not get me angry like so many but got me depressed. I had suicidal fantasies and was scared to death of the stem cell transplant that awaited me. My doctor said my MM was stubborn and going down slowly. I did 9 cycles before they gave me a transplant. But before that they put me on anti depressants and anti anxiety and within a week the voices in my head stopped and by the time I went in for transplant and found out it was nothing like I had made up in my head I was the happiest and most positive patient on the transplant floor, going for walks three times a day and doing the stationary bike :>). From that moment my life changed. I have never been so happy and at Peace in my life. After the first transplant my MM went down significantly but was still so high that I asked for a second transplant. The doctor laughed and said, you were the most scared and now you are asking for seconds LOL. Last week I was 100 days post transplant. I work at a healthfood store and take lots of healthy sups to keep my immune system strong. I was back to normal within one month and today when I got chemo was at 5.6 and that with Revlimid. I no longer have low hemoglobin. I not only practice yoga but teach it, I walk three times a week and I give massages and facials. My life is very full and fulfilling and I appreciate it more than I ever have. My family is my daughter son and husband, the rest can do whatever they want but like Madison I have found so much support in church, on here and other MM facebook sites that I found out we are not alone and we can do this. When I am in pain I take meds, when I am anxious I take meds. Like Madisson said, what do we have to lose, My live and kidneys are perfect, even during transplant and I rather have quality than quantity of life even with my now 8 year old daughter. I look and feel great (very short hair after going bold twice) and I seize each and every day by being a Light in the world. There is very little that bothers me any more. I have spoken in church (used to have such fear of that) and people say I give them Hope and have given cancer a different look.You can be on chemo, have cancer and live a very full life. Thank you for sharing your story Madisson and good luck to you Dean. Trust me, after what I went through both physically and emotionally I KNOW that if I can do it , so can YOUOUOUOU :>) Love and Light Cherie

14

I was going to say "May The Force Be With You", but clearly the force is already with you. Thanks so much for your response --- I'll be in touch Tuesday evening with more info, and options.

15

I admire the fact that you can do yoga etc. Every time I tried anything, I'd break a bone. They put me in the pain Clinic & broke my tailbone & hip bone. PT. FX my T4 & 5 doing exercise. I also had lesions all down my spine. Please, be careful.

Madison

16

Lievie,

what a story! Such a young age w/ children to raise, at 73 I've raised mine. I can only imagine how scary that would be. Seems this MM is hitting much younger group now, use to be more men than women & over 60 age group. I spoke w/ I young man only in his 20's. You know, what makes me mad is no history interest what-so-ever to see why we might have gotten this particular type of Cancer. I was a Nurse, I didn't work around chemicals. Don't you think, that falls under research? I can't remember a question being asked about life style in the past.

I thought, my lesions were bad sounds like yours were much worse. I had bad reaction to Revlimid only to my head, red, itchy, burning, rash from ear to ear along hair line. Dr. wants me to take every other day, take Bendadryl 1st. until script can be refilled at 1/2 strenght. IV Carfilzomib alone was not killing Cancer cells.I only had 1 stem cell transplant. It's that chemo that makes your hair fall out but that grows back 3 months-right.

Your courage is to be admired. I believe, God intended for us to help people like Dean. You speaking in church is wonderful, keep up the good work.Prayer has brought me through all this & all my church friends.

I need to add, My entire family didn't turn their back on me only ones live nearby. My daughter's family in TN. are wonderful although they're not nearby. I'm in MI they're in TN.My granddaughter there 18yrs. old would push me all over in a wheel chair. She took me to Grand Ole Opry. I try to walk all I can but does make the back hurt after too much.

You're such an inspiration, God bless you.Look forward to keeping up w/ your progress. I believe, God has more work for us to do until he's ready, we're not going any where-don't you think? You've got children to raise.

Madison

17

Lievie,

Forgot to mention 3yrs. ago had tumor growing out of sacral bone from with-in bone. It was pushing on nerves of rt. leg was why I was in w/c so painful. Radiation shrunk tumor, inoperable, can't have any more radiation to pelvic area. Just pray it doesn't return.

Madison

18

Hi Madison,

Thanks for your supportive response. Yes, it takes about 3 months for hair to grow back. Thank goodness I found out that I had a nice head (at least I was told LOL) so never had a problem wearing just a scarf or nothing at all. If you go to Youtube and type in Multiple Myeloma awareness you will find me (bald lady :>) with a ten minute youtube about MM and how it affected me. You are right, MM seems to hit younger and younger. I belong to a facebook page of MM under 50 and our youngest patient is 13 !!! I read somewhere if you were a tall thin, vegetarian woman, you were least likely to get it. Well, I was all those three things and still got it :>) Yes, they should do more research to the cause and the cure. This is a nasty little cancer. There are 11 times more breast cancer cases in the US but only twice the death rate, that should tell you something. I am glad you have some family supporting you, as I said due to my mothers Christian

science, none of them can handle being around cancer and probably think I did something "wrong" I did have one naturopath thinking my 10 year career as a flight attendant might have contributed as there is radiation especcially with the international flights that I did. So today I did my second day of Carfilzomid, I seem to do pretty good with it. Next week I will get my first results post transplant from it. The Revlimid was horrible at 25 mg, but at 5 mg I am handling it really well. Overall my life is really good now, though there is always that little voice in the back of my head. Hard to shut him up sometimes . Don't worry about my yoga. I have done it for years and I really know my body and my limits, no triangle poses for me, all very slow and gentle stretches, balancing poses and leg and arm and core strengtheners. I gained a couple of pounds in muscle back and feel and look a lot healthier than I did last year. Yes, it is people like us that can help the world and these forums just a little better for new patients like Dean. Support has been so important and healing for me (specially not having a family) all I want to do is pay it forward. Keep up the good work Madison. Blessings Cherie

19

Good Morning Lievie,

I look so forward to chatting w/ you. I was also told I had a cute head.(lol) My head was like a baby"s head, not one groove or bump. I was really shocked. One of my dear closest friends is a Hair Stylist in a pricey Saloon. She's been coming to my home & keeping my hair cut 5 yrs. I've had this. That really helps. I worry about her, she's my daughter's age. Now they're saying, that's a field of work MM attacks because of chemicals, Petroleum, I have a grandson at LA university in Petroleum Engineering. I worry about that,plastic, Nail Tec's. I want more research on causes.

I was on 15mg. Revlimid when had the bad reaction on my head. It's being lowered to 7.5 mg. but Insurance won't refill for 30 days. Don't blame them, 30 day supply is $10,000 do you believe it? As of now I'm taking every other day w/ Carfilzomid 2x week. How often do you take that?

Sounds as if you had an exciting career. I always envied your field of work w/ traveling cause I love to travel. Nursing was very stressful. I also sold Real Estate & went to Culinary School for 2 yrs. never did anything w/ it. Did open a business for 8 yrs. called "Party Tyme"" it helped w/ that. Rented tables, chairs, tents, etc. Anything for a party did weddings,planning, sold party supplies, even rented Adult Halloween costumes.Sold it worked 7days a week, always had ulcers. You name it, I tried it got bored easily. Nothing, that should cause MM.

Haven't heard from our friend, Dean. Gonna try to get in touch w/ him.

I'll have to check out You tube. I'm really not very computer savy. My son-in-law in Tn. is Computer Engineer but he's so far over my head. He'll try to help me on the phone I don't even know what he's talking about lol.

Sounds like you know what you're doing w/ the Yoga. I know, it's good for you just be careful.

Did I get your name correct? I am going into my 5th. year. Now they've increased the prognosis from 4yrs. to 7 but I don't believe in that. Only man above has that answer & I think, attitude plays such a big role, don't you?

Madison

20

Goodmorning Madison,

Lievie means sweetheart in Dutch (which is where I was born and raised :>) my real name is Cherie, which means sweetheart in French LOL, I am sweet all around :>) Sounds like you had a busy life and career as well.I can't remember what I all told you but I have been a waitress, stewardess, massage therapist, reflexologist, colon hydrotherapist and estheatician, I also went to a naturopathic school to get my BA in naturopathy, hence my leeryness of chemo. I now believe in intergrative medicine and live a life of balance, 80 percent good stuff, 20 percent forgiving myself for being human and eating what I want :>) You are right about the possible causes for MM, what would it really change though. I think we are so poluting that the earth is changing dramatically, too fast for our bodies to keep up with, therefore the cancer I think. I think it is the air we breath, the water we drink, the foods we eat. My husband thinks cancer is the bodies mutation to adapt to these changes and some of us will survive and pass this on to make children that will be able to handle these changes, while others will not. I don't know, I just want to live life to the fullest and doing what I can to keep this life as good as I can keep it for our children. Well, my drier just shut off, gotta fold that laundry while still hot right :>) Going to work after that. I hope you get ahold of Dean and I did not scare him away with my story (it was meant to inspire :>) BTW I take Revlimid every day 5 mg and Carfilzomid every other week two days in a row :>) Hardly any symptoms, so life is good. Take care my friend and enjoy this wonderful day !!!!