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A Patient's Blog: Tips for Dealing with Myeloma Treatment Side Effects

| 37 Comments
Pat.jpg
As a five-year multiple myeloma survivor, I have come to realize that most of my life will be spent taking what I call "perpetual chemotherapy."

Researchers and drug companies call this "maintenance therapy." But I like the term perpetual chemotherapy better, because it can include induction, consolidation and whatever else our docs want to calls the pills and infusions that we are forced to take in order to stay alive.

And I'm OK with that. Better than the alternative, right?

But it doesn't get any easier the longer we stick around. Most myeloma specialists agree that it's too risky to take extended drug holidays once a patient has relapsed (me!). The good news is that when I combine my personal therapy do's and don'ts with other tips I've gotten from reader comments and emails, I have banked a wealth of knowledge on how to minimize chemotherapy and radiation side effects.

So what do you say I open my "vault" and share some of these tips with you today?

  • Try to schedule your doctor's visits and infusions at the same time and on the same day. For example, I have a standing appointment at my local oncology center on Wednesdays at 3 p.m. I get my blood levels checked, and four out of every six weeks, a Velcade sub-q shot. I also get hooked up for a monthly Aredia infusion and see my medical oncologist as needed.

    But that's only the start. Wednesday evening I take my 10-mg Revlimid capsule, then 40 -mg dex right before I go to bed. That way I still get a good night's sleep, putting-off insomnia until the next few nights.

    By taking my meds on the same time and same day, I'm able to anticipate how I will feel over the next three days. I'm also convinced that my body adjusts to my schedule, too.

  • I have developed some pretty serious peripheral neuropathy (PN) over five years. My guess is some of you have, too. If so, you may already be using Neurontin (trade name gabapentin) to help minimize your symptoms.

    Here's an insider's tip for those of us who use gabapentin. A good friend and researcher who works with the drug shared how important it is to not take your capsules all at once--or even just in the morning and at night. "Add a capsule or two mid-day," he recommended.

    What a difference! I understand that gabapentin doesn't work for everyone with PN. But part of the problem may be that you aren't taking enough, or that your dosing schedule is off. Experiment a bit and hopefully you will be as surprised as I was about what a difference it can make.

  • Exercise. You have got to exercise! Walk daily. Take your wheelchair out to the corner and back. Swim, lift light weights. JUST MOVE! Regular exercise can really help your appetite and energy level. DO IT! PLEASE!

  • Don't put off other medical procedures just because you have multiple myeloma. I should follow my own advice! I need my right hip replaced due to several large lesions in the area and some serious acute arthritis that has developed in the joint. It accounts for more than half of the pain I experience when I exercise, shop or just try to move about the house. Don't make the same mistake!

  • Ask your nurses for help! I have found working closely with oncology nurses can assist you in a number of ways. They can give you tips to help manage side effects directly, as well as having your doctor's ear when it comes time to use drugs to help.

  • Try to remember why you are experiencing side effects: TO KILL YOUR CANCER! A fellow stem-cell transplant patient once told me that she felt a lot better just knowing that her ills were caused by drugs that were saving her life. But remember, that doesn't mean you should "tough-it-out" or not ask for help.

  • Try to stay positive. Exercise should help. So should see a therapist, meditating, practicing yoga and/or eating a wide variety of healthy food. And don't forget that making time to help others often helps you feel better, too!

Let's stop here. I can just see my editor scowling about how this week's post is too long!

I will share some more specific tips next week. Until then, don't forget to try and feel good and keep smiling!

Pat


37 Comments

Thanks for sharing your tips

Great tips----esp the one about exercise. It helps my mind, spirit, and body. Wouldn't mis it for the world.

Hi Pat,
Thank you for sharing your experiences and knowledge. I am a 3 year myleloma survivor after a tandem transplant in 2009, diagnosed in 2008. Scheduling is so important as you state, I travel 100 miles round trip for treatment and check-ups. Keep moving and active, and as you state "positive". I am sorry to hear you have relapsed and sincerely hope your current treatment is working for you. Please folks, don't sit and wait for that shoe to drop, move forward as best you can. Me? I'm going to Mexico fishing in 11 days.

Revlimid on brother!

This is so helful. I wish I knew about this blog when caring for my mom a few years earlier. She had a real rough time with taking the medications and she always wanted to speak with others with her disease but noone seemed to want to talk or at least none of the docs put you in touch with anyone, not sure why!

Great advice and a wonderful positive attitude.

Sorry, to hear that. There is nothing worse than people not wanting to listen or believe you when you are in pain, (including doctors).

Hi, Pat,

Very good tips. Thanks for sharing. Good luck!

Hi,
My 83 year old mom was just diagnosed with this and she was given remiland for just one week and she was like a rag doll at 25mg her whoel system is off so now we are waitign to get back to the dr to see if he will lower this whcih I am hoping. They say this is veyr treatable is it or is it a myth my mom has no more pain which is got me happy but confused since when she gets it she takes a tylenol and its gone is this good? I hope you will guide me and make me feel better too and my mom. We did nto do the velcade since my mom already has neuropathy from her diabetes she also gets a bone iv every month

Great advice. I had a stem cell transplant last Oct
and take my plethora of drugs at the same
time daily. I am on Thalomid due to low
platelet counts. I also had problems with
Revlimid during initial treatment, hi fevers.
Had my stemcell at Northwestern with Dr
Mehta, an outstand Dr. and person.
Diagnosed in April 2011 and was 72.

Thank you for your blog. I am 81 and was diagnosed 2 1/2 years ago. I have had the chemo cocktail with thalidomide, velcade and now revlimid, 21 days on 7 days off, with dexamethasone added one day a week. I feel just fine save for the fact I have considerable edema and PN. I am going to follow your suggestion and space out the 1800 mg of gabapentin. It makes me very sleepy, hopefully this will be a solution. It is what it is and we have to just keep trying new twists.

I am also a 5 year fighter ((as I prefer to call it) . You have said everything that I feel. It's just good to have someone else make the same comments. Thanks, I'll be watching for more of your comments. Nancy, from Ohio

Good tips Pat. I am an eight year MM survivor and have pretty bad PN. I have had both hips replaced, a spinal fusion, and right now my pelvis is fractured into a bunch of pieces. It is very painful to walk but I use a walker and still get out to movies, dinner, bridge, parties, cruises, etc. I try not to let the pain slow me down. Sometimes my husband has to push me around in a wheelchair. The drug that works the best for me is Velcade. Revlamid was hard on my kidneys and made my muscles ache. The PN side effect of Velcade is the down side of course, but my kidneys can function better. I have never heard of gabapentin. I will ask my oncologist about it next week. Thanks again for all your tips!

Started in 2003 you name it I,ve had it the best treatments have been radiation and thalidmide and now revlimid some pn but i still to getting along with only some household help, I live alone but have plenty of contact the friends and family. I support other MM patients. By Email and phone. It seems to help if you can talk to someone who has been thru the treatment they are facing. Just to give your slant on iit! Every drug procedure is different for each of us Australia seems to be up to all the latest treatments. But we get a lot of them for free or at reduced cost. Good luck to you all!

I too am a 72 year old male who got stem cells at Northwestern. I agree that Dr Mehta is first rate! I would recommend that MM patients make every effort to get to an IMF seminar, not only for the programs and lectures but also to interact with all the other patients and doctors that attend.

Northwestern is a great hospital. My boyfriend of 6 years has been dianosed with MM and my brother has a very rare liver disease. Northwestern did his liver transplant about 20 years ago and he is living a normal happy life. They saved his life.

Hi I had a stem cell transplant in June 2012 which was a success, however, since my transplant I wake up in the morning with alot of pain in both my thighs and it is difficult to walk when I first get up. The pain and weakness lets up after a few hours once I have been up and about. Has anyone experienced this? Thanks.

Hi Pat and Michelle,

What did your doctors say about the thigh pain?

thank you for your tips on managing side effects. I find the tip to execise very encouraging. I suffer with lots of fatigue on a daily basis. I'm 13 months out from my SCT. I too have significant PN and find that gabapentin taken on a regular schedule helps keep that suffering under control. It took a while to get up to the correct dosage and schedule but I finaly got there. I'm one of those who like to tough it out and not complain. I don't like taking mophone anymore and try to refrain from oxycodone unless the pain is extreme. I will be looking for more of your tips.

My mother just lost her battle with this disease.

YouTube Tribute: http://youtu.be/zhTswTygMfw

Hi Joel, I am sorry to hear about your mother's passing and can truly relate. I lost my mother two months ago. She was 60 and diagnosed with myeloma in 2011. I would really like to know about your mother's treatment plan because my mother had a difficult time including additional health problems. She was given an aggressive treatment plan during her last month. The toxicity of the last chemo was very intense and took over her. We are having a difficulty with her passing in relation to her treatment and care during her final days. Would you be able to share more of your mother's treatment details? I am at a point always wondering what really went wrong? We are waiting for autopsy results also.

Hi Pat,

Wondering if anyone has the side effect to Rev as I have of swollen ankles, with the right ankle area sporting a bad rash. A woman in our support group said she had a similar rash and her dermatologist recommended Fluocinonide 0.05% which eliminated the rash. My oncologist preferred I just use an over the counter hydrocortisone cream, and try Benadryl. I have one kidney which makes the myeloma situation a bit dicey, and the fluocininide seems to be a powerful cream that has many caveats. Is probably why the oncologist passed on the fluo. The kidney has been holding out for the 10 years since my diagnosis. Thanks for your blog! Ed

Thanks for this encouragement! After over nine years, I admit I've lately been feeling discouraged that the chemo, etc, is neverending [Ok, perpetual]. I truly AM grateful for every morning that I wake up and for oh, so much more. I suppose I needed a reminder that I'm not the only one living with this, emphasis on LIVING, so thanks again.

To everyone and Joel so sorry to hear about your mother. How old was she and how long did she have MM? I have been dx. since Feb 2012 w sctp last Sept. My labs all look good I am on Rev 10 mg for 3 wks on. I do have pn in hands, feet, hips and back.I have depression and anxiety on meds for all which is totally against my beliefs. I had to quit my job surgical nurse for 10 yrs. I'm home my friends and church family have nearly abandoned me that really hurts.I cry some so when someone asks me how I'm doing I just say fine and smile..just going to start a MM support grp next week.
I try to exercise daily but I hurt for awhile after. I do have some lesions bilat hips and pelvis plus right kidney mass they are watching for now.I'm trying to work on jewelry to sell to earn money will see how that goes. Lots of pressures but I do have good family support. Am I doing OK coping I am so use to running and hard work at work and now I feel like I'm an invalid? PS I'm a young 61.

Hi Pat, I have been living with MM for the past 8 years. As side effects of the various treatments, I have PN which make my feet feel numb and heavy as if I have just stepped out in a slushy road. I get frequent cramps in the feet, thighs, and hands/fingers. A spray of ICYHOT helps to relieve the cramps. With Injectible Velcade I landed after 2 cycles, in the Cardiac ICU one day unconscious for about 5 hours diagnosed as Hypertensive encephalopathy. I am also on perpetual Chemo , presently with Lenangio (revlimid) equivalent in India with dexa. Eventhough I am used to this combination for a long time, this time I had an attack of anemia with haemoglobin going down to 7% with its side effects of Low levels of BP, dizziness, general weakness, very poor appetite all resulting in rapid loss of weight.
Eventhough we may call all these as part and parcel of the game, with MM its too much pain and suffering and no cure in sight for the patients or the entire medical community. I wish AND PRAY all the MM survivors a PAIN FREE AND TENSION FREE LIFE.I am sure many will join me in this prayer.

With PN, numbness in both feet coupled with when cramps crop up, feeling of stiffness and swelling in feet are quite common .Ensure u take lot of fluids even water is good and ensure that u pass enough urine and balance the fluid levelin both thereby reduce the swelling cramps if any and so on. BEST WISHES.

I am 76 yrs. old and 3 mo. into Revlimid, Dex, monthly Zometa injections and daily pain meds. 4 months ago I could not walk because of severe back pain. The program seems to be working because I feel much better and I can walk. The problem is during the day my back pain returns but not as severe. I feel best in the morning with no pain. When I sit and rest during the day even for 15 min. the pain is reduced. Apparently I have compression in my spine because I've lost 3 1/2 inches of height. I will discus with my MD but does anybody have a similar reduction in height and what is the prognosis?

Bob Adamski

No need to respond to my questions about spinal compression in MM patients . Found an excellent publication by IMF on "Balloon Kyphoplasty and Myeloma-induced Vertebral Compression Fractures".

Bob Adamski

My Dad, age 74, was just diagnosed with mylenoma. He lives alone and about 30 mins from me and only goes out 1 day a week for cards-not around people daily. He is doing Dex, Revlimid and Velcade (injections) cocktail. Do you think it is okay for him to be home alone after treatment and if not for how long? He doesn't want to impose on us, but the idea of him being alone coping with whatever side effects is hard for me to accept. Would like the opinion of folks who have been through this. Is being all alone a wise idea? Thank you!

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