karl&myeloma

One man's experience with multiple myeloma

Tag: Revlimid

February 5, 2013

Today is Rd 2-24.

Yesterday, I did see James Berenson. All told I was there for nearly 2 hours. He asked many questions about me and my history, did an exam, and provided some recommendations:

1. Decrease Revlimid to 10 mg from 15 mg.
2. Stop dexamethasone and replace with Medrol (methylprednisolone).
3. Restart the Zometa (zoledronic acid).
4. Increase calcium to 1 g (1000 mg) daily.
5. Continue 81 mg aspirin daily.
6. Continue Vitamin D and check current levels, adjust dosage if needed.
7. Start Alpha Lipoic Acid 600mg to help with peripheral neuropathy.

So, on Thursday morning I shall discuss all this with Warren.

While it was very tiring, I believe it was well worth it.

Thank you, Lord Jesus, for my healing.

Amen.

February 3, 2013

Today is Rd 2-22.

Kathleen and I went to the Chapel of St. Andrew this morning for the regularly scheduled Healing Service. Things always feel better after this.

The Mingling Melodies and Motors was a fun day yesterday for those who came. The cars were well worth seeing and the Fabulons were in good form too. Kathleen and I were both exhausted at the end of the day; Kathleen much more so than me. She worked about 9 hours on Friday and another 9 hours on Saturday.

Tomorrow is my crazy day. To and from Los Angeles in one day to see James Berenson, who is the most well-known proponent of myeloma patient care without resorting to Autologous Stem Cell Transplant. He also believes in using the lowest doses possible of anti-myeloma agents that will give slow, steady improvement without causing side effects. I can’t wait to hear what he will recommend for me.

Thank you, Lord Jesus, for my healing.

Amen.

January 27, 2013

Today is Rd 2-15.

Today Kathleen and I went to church at The Chapel of St. Andrew. There was lots of activity around our charity fund raiser coming up this Saturday, February 2nd, called Mingling Melodies and Motors. We’re having an old car show and a group called The Fabulons will be singing 50s and 60s tunes all starting at 1 PM.

I was kind of down last Wednesday. The peripheral neuropathy seemed to really be coming back in force, up to about 20% – 25% of its peak last September and October. I wondered whether I was ever going to escape this. So, I made the appointment with Dr. Berenson on Thursday. He is in West Hollywood, CA about 15 miles from Los Angeles (LAX) airport. If you recall from an earlier post, he is the leading proponent of avoiding stem cell transplant for myeloma patients.

My itinerary is: 07:10 EST depart Fort Lauderdale (FLL); 10:10 PST arrive LAX; 12:00 meet with Dr. Berenson; 16:05 PST depart LAX; and 23:50 EST arrive FLL. Full day, huh?

I’ll miss the February Myeloma Support Group meeting. Oh, well!

Meanwhile, the peripheral neuropathy has eased off again. Prayers do work!

Thank you, Lord Jesus, for my healing.

Amen.

January 16, 2013

Today is Rd 2-4. I forgot to take my dexamethasone this morning so I will take it tomorrow.

I met with Warren this afternoon to review my most recent blood work. My M-spike was up slightly to 0.7, it was 0.6 last time. All my other numbers are good. Warren suggested going up on the Revlimid from 15 mg/day to 25 mg/day. I told him that I thought that my peripheral neuropathy symptoms were getting slightly worse. Revlimid is known to cause peripheral neuropathy in about 6% of patients. I told him that I was reluctant to go higher because of the neuropathy. We agreed to wait for the next blood test on February 1st, and my appointment on February 7th.

Other than the neuropathy, I really do feel great. I am sleeping well, and occasionally feel tired during the day. It’d be nice for some good news on the M-spike, though.

Thank you, Lord Jesus, for my healing.

Amen.

January 13, 2013

Today Rd 2-1 and it. Is also Kirsten’s birthday. Happy birthday, sweets!

Today, Kathleen and I went to our usual service at St. Andrews. It was a nice service celebrating the baptism of Jesus by John.

We also did some shopping. Kathleen is now the proud owner of an iPhone. Hurray! It took way too long.

Generally I’m doing pretty well. I’m still not sure what’s going on with the peripheral neuropathy and whether it’s getting better still or perhaps slightly worse. All-in-all, I can certainly manage at this level.

So far, the worst of the Revlimid seems to be fatigue and a rash that seems to controlled by using a lotion on the affected areas, mostly on my forehead and cheeks.

On Wednesday, I get the results of my most recent blood sample from last Wednesday. I’ll bring you up-to-date then.

Thank you, Lord Jesus, for my healing.

Amen.

January 8, 2013

Sunday was the Feast of the Epiphany. Kathleen and I went to our usual 10:30 service at the Chapel of St. Andrew. Being the first Sunday of the month, we also had the Healing Service. This is always such a comfort.

Today is Rd 1-24 and there are no drugs to take this week as this is my seven day rest week.

I finally got more of the curcumin. This time from Thorn Research in Idaho. Thorn has licensed a new special form of complexed curcumin developed by Indena in Spain. This version is complexed with soy phosphatidylcholine, which makes it much more bioavailable. I only take two capsules and can get the same benefit of 16 capsules of the regular curcumin. I’ll let you know how it goes.

My peripheral neuropathy is still hanging around. I learned last night at my myeloma support group, that Revlimid can also cause this – even though it’s only listed on the package insert as a 6.5% incidence as a possible side effect. Needless-to-say, I’m continuing to take the amitriptaline.

All-in-all, I’m feeling pretty good.

Thank you, Lord Jesus, for my healing.

Amen.