karl&myeloma

One man's experience with multiple myeloma

Tag: Revlimid

May 2, 2013

Today is Rm 5-26.

And it will be the last that I will pursue this particular therapy.

As you know, I had discontinued the methylprednisolone already anyway; that was to have been replaced with dexamethasone. Well,

I saw Warren today who said he was shocked at my results:

My IgG has climbed to 3115, from last month’s 1420 – my original value was 2858.
My Kappa free light chains has climbed to 1308, from March’s 350 – my original value was 707.
My M-spike has climbed to 2.2, from last month’s 1.0 – my original value was 2.1.

At first it may seem that I am worse off, and going strictly by the numbers, this would seem to be true. However, there is more to staging than these numbers. Over the next week, I’ll have another PET/CT, a bone marrow aspiration, an update on any chromosomal abnormalities, and another 24 hour protein urea test. Then we’ll know where I am.

One thing is clear, Revlimid did not work for me – not at my median dose anyway.

I do have lots of treatment options that are open to me. Stem cell transplant may very also very well be in the cards, perhaps at the end of the summer. Need to try to get my numbers under better control first.

I will keep you all updated as I get more information. God bless you all!

Thank you, Lord Jesus, for my healing.

Amen.

April 23, 2013

Today is Rm 5-17.

Today is also the 1-year anniversary of my beginning chemotherapy for myeloma. I remember it quite clearly. First thing was to swallow 11 x 50 mg tablets of cyclophosphamide (Cytoxin) on an empty stomach. Each tablet is about 1/2 inch in diameter. Swallowing 3 or 4 was one thing; swallowing 11 was quite another. It generally took 2 glasses of water. Then there was the 5 dexamethasone (Decagon) tablets. At least these were small and easy to get down. Then a drive to Lynn Cancer Center for my subcutaneous shot of bortezomib (Velcade). On my way home, I rewarded myself with a latte at Starbucks. Got home, drank my coffee while I dealt with work email. Then, I felt really tired, so it was off to bed for a 2-hour nap. Early on I tolerated this regimen quite well. Then, later in July, I started to get symptoms of peripheral neuropathy that only got progressively worse to the point where this therapy had to be stopped, even though it had done well against the myeloma.

So now since last December, I’ve been on a lenalidomide (Revlimid) therapy plus steroid. I’m in my 5th cycle. The first 2 cycles were with dexamethasone and the last three with methylprednisolone (Medrol) – this most recent will be my last on this steroid. One of the side effects at this dosage level is weight gain and redistribution of fat on the body; which I’ve particularly noticed over the last month.

I spoke with Warren today, and he agreed that I should discontinue the methylprednisolone which I will do by using the few tablets I have left to titrate myself down to zero by early next week. I’ll then restart the once weekly dose of the dexamethasone. I also sent a note to James’ office saying that was planning to do so after I had consulted with Warren.

I’ve also discontinued the curcumin therapy – I can’t see that it has been any benefit to me for the myeloma.

Thank you, Lord Jesus, for my healing.

Amen.

April 4, 2013

Today is Rm 4-26.

I met with Warren, my hematologist-oncologist. I got my new numbers. Both the M-Spike and my IgG are up: the M-Spike to 1.0 from 0.7 and the IgG to 1420 from 1099. Not the news I was looking for.

We agreed to let my current therapy ride for one additional month and make decisions then. If the M-Spike continues its upward trend, Warren will schedule another PET/CT, bone marrow aspiration and possibly an MRI to see whether any organ damage is developing. He will also discuss options for therapy with James before any decisions are made.

Meanwhile, the only side effects I’m noticing are some weight gain (from the steroids) and some leftover peripheral neuropathy simmering around 10% of peak.

Perhaps stem cell transplant may be the best option yet. We’ll see.

Thank you, Lord Jesus, for my healing.

Amen.

March 31, 2013

Today is Rm 4-22.

Today is also Easter Sunday. Hallelujah, The Lord is risen! The Lord is risen indeed, Hallelujah!

Kathleen and I were up at 4:45 am to get to the Chapel of St. Andrew by 5:30 for brief rehearsal of the bell ringers and choir before the 6:30 sunrise service. All went quite well, even my trumpet playing did not have so many flubs. Then we enjoyed our champagne brunch before the choir and bell ringers again played for the 10:30 service. We got home at 12:45 pm, 8 hours after we got up. It was nice to come home and nap.

Tomorrow I have blood drawn to see how my numbers are doing. Results later this week.

Thank you, Lord Jesus, for my healing.

Amen.

March 23, 2013

Today is Rm 4-14.

It is also the one year anniversary of my diagnosis of myeloma given after the biopsy of my right clavicle confirmed this cancer among other, according to Manny (my orthopedist), far worse alternatives.

What have I experienced?

What have I learned?

Where to from here?

My experiences. Where to start? I have had very many tests – the worst of which were the bone marrow biopsy from my pelvis and the whole body MRI that took over 3-hours. Both are necessary for myeloma patients. The easiest I think is the whole body PET/CT scan where you get to rest or sleep for an hour before entering the machine.

I’ve had quite a number of the standard treatments for myeloma patients – bortezomib (Velcade), cyclophosphamide (Cytoxin), dexamethasone (Decagon), – combined these 3 add up to CyBorD – one of the common first line therapies for myeloma, zoledronic acid (Zometa), lenalidomide (Revlimid), and methylprednisolone (Medrol).

To combat nausea, I’ve used the prochlorperazine (Compazine), ginger capsules, crystallized candied ginger, and 180 mg simethicone (Ultra-strength Gas-X). To combat constipation, I’ve used prune juice, dried prunes, docusate sodium with sennosides (Senokot-S), polyethylene glycol 3350 (Miralax) and bisacodyl (Dulcolax). The things that worked most reliably over time was the 2-capsule dose in the evening of the 180 mg simethicone, and the best of all is the daily 160 mg capsule of magnesium citrate which has kept me normal for months now.

To combat peripheral neuropathy, I’ve tried oxycodone with acetaminophen, and hydrocodone with acetaminophen for pain when I reached Grade 3 – all these did was alleviate pain. The actual symptoms were relieved with amitriptaline (Elavil) that I continue use to take to keep it under control at a Grade 1. I also take biotin, vitamin B6, folic acid, and vitamin B12 as all of these are thought to help with neuropathy.

But all this is just the mechanics of cancer treatment and treating side effects.

Of course, I must mention the care of my hematologist-oncologist, Warren, my orthopedist Manny who made the original diagnosis, my chiropractor Neil who first sent me for other care, the staff at Lynn Cancer center who really are first rate, and the education I’ve received from organizations such as the International Myeloma Foundation, the Multiple Myeloma Research Foundation, and my local support group headed by Gail and Dawn.

What is most important in a fight of this magnitude, is love.

The love and support I receive from my wife, Kathleen, our children, Kristofor and Kirsten, many good friends, coworkers, and the healing ministry at the Chapel of St. Andrew especially Emily-Nell, Faye, Cheryl, and Lillian. I am convinced I would not be in the quite good condition I find myself in but for all these people. Thank you from the bottom of my heart!

Learnings. Stop or reduce therapy sooner when peripheral neuropathy rears its ugly head. Make sure you get second or third opinions as to what treatment is best for you – this is truly imperative! Understand that you will get grouchy under the anti-myeloma meds. Know that your loved ones are taking quite a lot from you and you can’t tell. Take advantage of all the healing help you can get – whatever alternative therapy it might be – I’ve used many. They all help, or at least since I’ve used so many I can’t say that any one particular alternate therapy in particular did not help. I am convinced, though that Spiritual Healing has definitely been a huge benefit. The solitary plasmacytoma I had in my clavicle was gone quite quickly thanks to healing prayer.

Where to from here? This has certainly been a journey. While I have not achieved complete remission, I am in a good stable state, where my numbers seem to be in good control on what amounts to a maintenance therapy. Hopefully, I can rid my self of the steroid and zoledronic acid in the near future. In the meantime, 2 new therapies have been approved by the FDA, and more are in active clinical studies. Many physicians think that myeloma is about to move from being incurable to a chronic condition. The International Myeloma Foundation has announced its Black Swan initiative to once and for all develop a cure! Things are moving very quickly in treating this cancer. So, if I had to get one, this is probably better than most.

Finally, I cannot understate the comfort I have received from prayer, especially during the worst of my peripheral neuropathy symptoms with the sharp pains that, at level 7, would attack as often as every 10 seconds. These had me reduced to tears on at least 2 occasions. My only comforts were the loving touch of Kathleen and my oft repeated prayer:

Thank you, Lord Jesus, for my healing.

Amen.

March 12, 2013

Today is Rm 4-3.

I met with Warren today and got my most recent results.

It’s interesting that on one hand my serum protein electrophoresis (SPEP) results, which is the usual way my M-Spike is measured came in at 0.7, and on the other my urine immunofixation test came in at no M-Spike detected. One of the things I learned recently is that SPEP is very inaccurate at levels below 1.0. Supposedly, a urine immunofixation is much more accurate. If that is true, then I might be characterized as being in complete remission. I didn’t get as clear an answer on this point as I should have. I will call Warren on this point tomorrow.

What Warren did say is that I am in a stable situation that he likened to Smoldering Myeloma or MGUS (monoclonal gammopathy of unknown significance). He said I could be in this place for years and could even be able to drop the steroid and/or the zoledronic acid before too long.

I still have issues of peripheral neuropathy in the soles of my feet (no recent issues in the fingers) which seems to vary up and down between about 5% of where I was at maximum to about 20%, where the sensation is borderline pain. Warren brought up Pomalyst (pomalidomide) as a possibility for me, if needed if the neuropathy gets out of hand.

All-in-all, I am very thankful to be where I am.

Thank you, Lord Jesus, for my healing.

Amen.

March 6, 2013

Today is Rm 3-25.

I am very bummed. I thought I had posted a few days ago, and I just accidentally deleted it. It was a good posting. I will not try to re-create it.

Basically, I am very happy with where I am. Last April my PET/CT showed a pathological fracture in my right clavicle from the plasmacytoma caused by the myeloma, and lytic lesions in my left temporal bone (the skull bone just forward of the ear) and in my vertebra. A lytic lesion is a hole in the bone eaten away by the myeloma. In November, I had another PET/CT scan which showed that all those issues were gone!

Somehow I never noticed the lytic lesions in the report from last April before. Now it’s all gone. I will see Warren next Tuesday and ask him how typical this is.

However this turns out, I am extremely thankful for the healing that has taken place. Wow!

Thank you, Lord Jesus, for my healing.

Amen.

February 24, 2013

Today is Rm 3-16.

As you know, I’ve been taking 40 mg every other day of methylprednisolone instead of 20 mg dexamethasone once per week. (Dexamethasone is known to be the single most powerful steroid in use in oral chemotherapy for cancer at this time.) My alternate consulting physician, James, had suggested the methylprednisolone regimen because he doesn’t like the effects of the dexamethasone. It is known to be less powerful and patients seem to tolerate it better.

I was about 10 days into this regimen of taking the methylprednisolone every other day in the morning with breakfast and last week found that I was getting the jitters in the afternoon and sometimes having trouble sleeping. So I made a telephone consulting appointment with James last Friday evening and explained my situation. He suggested I try two things before I reduced the dose: 1) try taking the methylprednisolone at night before going to bed, or 2) splitting the dose as 24 mg first day, followed by 16 mg the following day. I decided on the latter, and so far, so good.

I’ve also changed one habit in taking the Revlimid. I now take it just before bedtime with the other myeloma drugs (81 mg aspirin to prevent Deep Vein Thrombosis (DVT), 25 mg amitriptaline for relief of peripheral neuropathy, and the extra calcium James asked me to take).

It seems that the peripheral neuropathy in my feet is better, perhaps at least partly because of the Alpha-Lipoic Acid capsules that I’ve also been taking in the morning along with my other supplements and steroid. I haven’t had many issues of the sharp pains recently, either. One thing strange is that I’ve picked up some peripheral neuropathy in the tip of my ring finger of my left hand. I’ll watch this closely.

Thank you, Lord Jesus, for my healing.

Amen.

February 15, 2013

Today is Rm 3-6.

On Wednesday, I had an infusion of zoledronic acid or Zometa. James had recommended it and Warren agreed to put me back on this monthly infusion. We’ll see how it goes.

Yesterday, I developed Rev-Rash all over my arms. Fortunately, I keep a bottle of body lotion in my office. As before, this seemed to resolve this side effect.

Today is my second day of dosing with methylprednisolone instead of using dexamethasone. This is without a doubt, the most bitter tablet I’ve ever had the misfortune of having to swallow. So, today I took it with water between spoons of cereal at breakfast. This helped. I’m still trying to decide how much it affects my sleep.

Also nasty tasting and foul smelling is the Alpha-Lipoic acid capsules of 600 mg. I’m taking it to help out with my peripheral neuropathy. The neuropathy has gone back up from a low of about 5% of my worst experiences just before I started the Revlimid in December to about 15% to 20% of that worst level. I now feel the occasional sharp pains in my feet.

I know I have not written about Margot and Neil recently. I have been seeing both regularly. Margot worked on my feet as well as my back and neck. I really do think that my regular chiropractic care has been helping my overall health and helping to manage the side effects.

It has also been a while since I discussed spiritual healing. I was recently reminded that cancer is the most difficult for spiritual healing to have a quick response with.

I am reminded of the old joke about the devout gentleman who was in a flood. He had climbed onto his roof. In a short while, someone in a canoe came by and asked him to come aboard. The man responded, “No thanks, God will save me.” After an hour later, the man had to move to the peak of his roof because the waters kept rising. A speedboat came by and the driver asked him to come aboard. As before, the man replied, “No thanks, God will save me.” After another 20 minutes, the man was standing on his chimney with the flood waters swirling about his knees. About 5 minutes later, the waters were up to his waist and a helicopter came by dragging a ladder. The pilot motioned for him to grab the ladder. The man waived off the helicopter saying, “No thanks, God will save me.” Shortly afterwards, the waves swept the man away and he drowned. When he reached St. Peter, he had only one question, “Why didn’t God save me?” To this, St. Peter responded, “What are you talking about? We sent you a canoe, a speedboat, and a helicopter. Wasn’t one of these good enough for you?”

The moral of this story is that we cancer patients must listen to our doctors, friends, and care givers. We must choose the therapy that we think is right for each of us. But we cannot ignore it and expect God to heal us without some other therapy. We must be smart enough to use the guidance given to us by God and with God’s help, make our choices.

Thank you, Lord Jesus, for my healing.

Amen.

February 10, 2013

Today is Rm 3-1. The “m” replaces the “d” because the steroid I’m now taking is methylprednisolone.

Today, Kathleen and I went to church at the Chapel of St. Andrew. After, we hightailed it down to Miami where we saw The Magic Flute at the Adrienne Arsht Center. It was a wonderful production. The singer for the the Queen of the Night was great!

Last night, we met Rich and Dottie for dinner at Boca Skewers. Then it was on to the community theater production at Sugar Sand Park in Boca Raton to see Kiss Me, Kate. We had never seen this before. Cole Porter does a masterful job of weaving Shakespeare’s “The Taming of the Shrew” into a modern musical, reminiscent of “Noises Off” – another play within a play. Many of the tunes were quite familiar, especially “Always True to You in My Fashion”.

But on to the reason for this blog. I met with Warren on Thursday. He said he had received a message from James Berenson, with my recommended therapy moving forward. He said he was willing to try it. So, tonight I started my third round of Revlimid therapy, but this time at only 10mg. Oh yes, I also got my most recent blood level numbers and my M-Spike had come down slightly to 0.6!

Thank you, Lord Jesus, for my healing.

Amen.