Hi all. I've been following the forum since I was diagnosed 3 years ago. Now I am really confused and not even sure how to pose an intelligent question to my doctors.
3 years ago I broke my left leg and was almost immediately diagnosed as stage 3 and hospitalized for intensive treatment. After that, I went through a treatment cycle of nearly a year: Velcade, dex, Zometa, and Revlimid. I also had radiation for arms and legs, but once the peripheral neuropathy hit, I quit everything.
For a while bone pain was horrendous and the neuropathy was totally mind numbing, scream out loud, awful. I could barely function on any level. During treatment I lost about 50 pounds and was so sick, well, it is all but indescribable the misery.
Now that I have been off treatment about 20 months the weight is back and I feel better, but I have not regained any strength or stamina.
While I was in so much pain I got put on morphine with an oxycodone kicker that helped tremendously, but the medications kept me mentally fogged.
About a month ago I got really sick, throwing up several times a day, fever, aches. Maybe a flu, I don't really know. I realized I had not been able to keep up with the morphine and the bone pain was tolerable, so I stuck it out a week or so longer and managed to kick the morphine. It was no picnic, but I got through and as of a few days ago, blood work indicates I am morphine free.
In the meantime, for the past year or so, my blood work seems to indicate that the multiple myeloma is "stable", although the lesions have "exploded" and are "too numerous to count".
I am weak, I cannot move or even walk much without getting dizzy and breathless. Normal household chores are exhausting. Pain-wise, I am doing OK with the oxycodone, turmeric, arnica rub, and OTC pain relievers, but there are times when the pain is exceptional, especially in my arms, where it seems the worst of the lesions have developed, and the crippling neuropathy just keeps getting worse. I have fractured ribs and spine bones that hurt constantly and the broken leg cramps up quite a bit.
I want and try to be active, but it is really hard. Even without the morphine I have difficulty concentrating. I hate being on disability. I hate that I cannot work. I had a great job. A job I was good at. I miss work, I miss my clients, I miss being out and about.
The confusion for me is what do I do? How long is stable? What's next?
I feel like I am in some kind of limbo waiting for the other shoe to drop, sort of a sword of Damocles existence. I have good support; no family, but really great friends and neighbors. I just feel so helpless, depressed, anxious, aimless. I cannot sleep without Xanax (alprazolam) and Ambien (zolpidem). I am always tired and right now, just plain tired of putting in the effort to be positive without any hope that there is a future. Well, truth is, there is no future, right?
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Re: Constant fatigue & pain: what's next?
gwells5
I would talk to your oncologist as increased lesions and apparent fatigue do not appear to be an indication of stability. The increase in lesion activity alone indicates a progressive disease. Velcade is known to cause peripheral neuropathy in many patients. Kyprolis, another drug in the same class as Velcade (proteasome inhibitors), is less likely to cause peripheral neuropathy. I am not sure why they did not try the substitute.
Are you seeing a myeloma specialist? If not, you should look into that. There are a lot of treatment options available that may help you.
I would talk to your oncologist as increased lesions and apparent fatigue do not appear to be an indication of stability. The increase in lesion activity alone indicates a progressive disease. Velcade is known to cause peripheral neuropathy in many patients. Kyprolis, another drug in the same class as Velcade (proteasome inhibitors), is less likely to cause peripheral neuropathy. I am not sure why they did not try the substitute.
Are you seeing a myeloma specialist? If not, you should look into that. There are a lot of treatment options available that may help you.
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Ron Harvot - Name: Ron Harvot
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Feb 2009
- Age at diagnosis: 56
Re: Constant fatigue & pain: what's next?
So sorry to hear about the pain you are going through. I do not see any details about your treatment. Do you take Zometa for your bones? Have you been through a treatment regimen for your myeloma already?
I am new to this forum and my mother was diagnosed in May after she broke her arm.
All I can say is that there are so many here going through all these. You are not alone. My mother, who is in the same boat as you, complains about pain in her back and arms daily, and I feel helpless.
But yes, there is hope. There are so many positive people, positive stories here, and it just decreased my initial trauma / fear of multiple myeloma. My mother now does breathing exercises (pranayam) for around half an hour, meditation for an hour, reads lot of books, tells stories to her grandkids. Her favorite way to pass time is to see kids play and laugh in the park. She laughs along from 4 to 7 in the evening.
Stay positive. Although its hard with so much pain, you can. Our bodies have magical healing powers. Brain controls our pain. All I can say is 'meditate'! Never lose hope.
I am new to this forum and my mother was diagnosed in May after she broke her arm.
All I can say is that there are so many here going through all these. You are not alone. My mother, who is in the same boat as you, complains about pain in her back and arms daily, and I feel helpless.
But yes, there is hope. There are so many positive people, positive stories here, and it just decreased my initial trauma / fear of multiple myeloma. My mother now does breathing exercises (pranayam) for around half an hour, meditation for an hour, reads lot of books, tells stories to her grandkids. Her favorite way to pass time is to see kids play and laugh in the park. She laughs along from 4 to 7 in the evening.
Stay positive. Although its hard with so much pain, you can. Our bodies have magical healing powers. Brain controls our pain. All I can say is 'meditate'! Never lose hope.
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