One man's experience with multiple myeloma

Tag: Zometa

September 6, 2012

Met with Warren and got some very good news today. My M-Spike is down to 0.3 according to the blood samples taken last week! Once I’m down to 0.2, I’ll have achieved Very Good Partial Remission (VGPR); 0.0 means Complete Remission.

Warren is unsure at this time whether the muscle pain and bone pain I’ve been experiencing has been due to the Zometa or is an expression of peripheral neuropathy due to the Velcade. He does not want it to get any worse.

We agreed to run one more cycle of CyBorD, Once per week for 3 weeks and 2 weeks off just like this last cycle. While Warren said that Zometa can hang around in bodies for a long time, it seems to me reasonable to see whether this side effect might come down slightly once I have missed a dose of the Zometa that I would have had next Monday.

So my thanks to you all again for all your thoughts and prayers. They are working! May God bless you and keep you.

September 2, 2012

This morning, Kathleen and I went to the Chapel of st. Andrew for the regular 10:30 am service. This included the monthly Healing Service. It was our first service without our former priest-in- charge, Debbie. It was well attended. Kathleen and I hosted the coffee hour after the service. We had a good time.

Then we drove down to Lauderdale-by-the-Sea to the Sea Watch restaurant where we had lunch outside on the upper deck. Great view. The lobster rolls weren’t quite as good as last time, but the key lime pie was!

While I wrote earlier that the muscle and bone pain deemed to be decreasing slowly, I’m not as sure today. Generally, I feel pretty good in the morning when I first get out of bed. The more time I spend on my feet, the worse I feel through the day. The worst of the pain at night is not the dull ache that I have during the day, but the occasional and brief (thankfully) very sharp pains that I feel mostly in my ankles, feet and toes. During the day, I can put up with them but these are what keep me from sleeping. By the time I go to bed, I find that regular acetaminophen does not give me enough pain relief to sleep. The hydrocodone + acetaminophen does work about an hour after I take it. I still use the socks and extra blanket to keep warm. (In case you do not recall, my oncologist Warren and I currently think that this muscle and bone pain is left over from the Zometa that I took monthly for three months. Warren and I agreed that I should discontinue this drug during my last appointment with him since it appears I do not tolerate it well.)

I have my next regular appointment with Warren on Thursday. I intend to question him closely about all this.

August 20, 2012

Last night was uneventful by recent standards. No sign of Mr. Hyde. I slept quite well.

Day 14 of Dosing Cycle 6, dosing day 3 of 3.

6:35 AM – Took my cyclophosphamide.

7:45 AM – Took my dexamethasone and acyclovir along with my breakfast.

9:55 AM – Arrived at Lynn Cancer Center.

10:10 AM – CBC sample taken by Dorothea.

10:55 AM – Velcade shot given sub-cu by Paula. Paula gave me my CBC results. The results are good

August 19, 2012

Mr. Hyde returned in the early morning hours.

Feeling the muscle pain starting to return last night at about 11 pm, I took the acetaminophen and this time took 2 diphenhydramine. I doubt I shall try that again under these circumstances. Around 2:15 am, I was awakened by the muscle pain, but not quite completely because the diphenhydramine kept me groggy. I felt as though I was in a never-never land of hell because I couldn’t sleep and I couldn’t wake up. Only Kathleen’s calming back rub let me know that I really was going to be OK. I did fall asleep soon after.

Woke up feeling pretty good. Kathleen and I went to church at the Chapel of St. Andrew and the did some food shopping.

I look forward to the muscle pain side effect wearing off in time. All my other complaints that I have posted about have gone away: dysgeusia (not being able to taste salt or sour), constipation, nausea, etc. Even my peripheral neuropathy seems to be under control. You readers really do have immense power. All have gone away under the weight of your thoughts and prayers. The muscle pain will also go away in similar fashion. Thank you for all you do. Sometimes I must sound like a broken record, but I really do give thanks for all the good news: my myeloma numbers keep on improving and I have a good clinical plan worked out with Warren. God bless you all!!

I will not complain about my fatigue because I see it as healing time. God and my myeloma meds need time to work on me.

August 18, 2012

Like the evil twin, early Saturday morning was the Mr. Hyde to my Friday evening Dr. Jekyll.

Around 2 am, the muscle pain returned enough to prevent me from sleeping again until after 4:30 am. Besides trying the acetaminophen and diphenhydramine, I actually got on our recumbent bike to see if 20 minutes of light exercise might help; either it did or exhaustion took over.

Later in the morning, after a nice breakfast, Kathleen and I went to the beach. We got in some nice swimming in a very calm sea, and caught some good rays. Took a nap that afternoon. Then we met up with Mike and Robin at the Mellow Mushroom (a pizza place) for dinner. While the rain was heavy on our way there, it was a wonderful evening!

August 16, 2012

I saw Warren today for my regular appointment. He agreed that I should discontinue the Zometa as I wanted to. He also agreed that I could have 2 weeks off between cycle 6 (current) and the next. So, I’ll complete cycle 6 on Monday, and tentatively start cycle 7 on Sep 10th. He wants me to have a work up during the 2 weeks off, so I’ll have blood drawn on Aug 30th and see him on Sep 6th.

The idea is to give me a rest in the expectation that I can regain some strength before cycle 7. this is what I think I need. Warren thought that this was a very low risk approach to improve my quality of life.

August 11, 2012

I’ve updated my posting for July 28 to show two photographs.

Nausea, fatigue, and leg pain continue to be my major complaints. The nausea is sort of under control, but my appetite is still not good. Fatigue has been a large issue since I’ve not had the strength to remain at work for full days on Thursday and Friday this past week. The leg pain, or muscle pain may have an explainable cause:

In checking the package insert for the Zometa product, that I have now been dosed with three times, I see that muscle pain is a fairly common side effect. During my next appointment with Warren next Thursday, I will tell him of my desire to discontinue this therapy. Especially, when I consider that I don’t have the lytic lesions (small holes in my bones), for which Zometa is normally prescribed for myeloma patients. While there is some evidence that Zometa has anti-myeloma activity all by itself, I personally no longer think that this product is right for me.