Resting After Cycle 2

I finished cycle 2 of bendamustin/revlimid last week and am now in my recovery week. We continued to progress, albeit not at the rate of the first cycle. Iggs dropped another 300 points, down to 3800 from 4100. M spike is at 2.6, down from 2.8. The 3 weeks of being on chemo is challenging and mostly exhausting, causing me to sleep more than I thought possible. Still making 3 to 5 visits a week to the clinic/hospital for blood checks and transfusions.

You may recall that I had to undergo radiation treatment last November due to an "impending" fracture of my left arm--the top of the humorous near the shoulder. Well, sometime in the last 6 weeks my arm broke, completely fracturing. Is that why it continued to hurt? Anyway, in my condition surgery is not an option so I've got the arm in a sling for the indeterminate future. As if I don't have enough issues! And I continue to be without driving privileges.

It seems that life has slowed to a crawl. The effects of the chemo and cancer combined with the treatment regime and transfusions leave little or no time for living. Susan is bound up in all of this and I feel so sorry for her as she has to take me everywhere as well as watch me as I struggle with the entirety of that I've been given to deal with. The girls are great support for both of us. Catherine checks in regularly and Julia drops by at least a couple of times each week as well as helps in getting me to appointments when she can.

The progress with the new drug is promising and has lifted our spirits a bit. We continue to be grateful for all the support of our friends and family.
Love,
Dan

A Stunning Start to 2012

Received results of last week's blood work. For the first time in at least 18 months, maybe longer, my IGGs have taken a hit. They dropped from 7700 to 4100. The best we've been able to accomplish since I was at MDAnderson was stability. I don't remember any reduction of disease levels since February 2010. I was so surprised that tears came to my eyes as the fight over the last 2 years seemed to be released, at least for a moment. Man, this has been a rough road and it seems that all we're looking for is the smallest progress to keep us going. The regime that has brought down the IGGs is a concoction Rifkin, my doc from MDA who is now at Sloan/Kettering, and a few of their colleagues. No set protocol, just a combination they thought might work: bendamustin, revlimid, dexamethasone, supplemented with numerous transfusions and neupogyn shots. Rifkin is reserved about the results, knowing how difficult my disease is, but nonetheless, we'll start cycle 2 on Monday.

I've become good friends with all the nurses at the clinic and the news of my progress burned through the halls today and I was hit with numerous good wishes from all the nurses who have taken care of me these past years and who have expressed much concern about my well being as we went from one trial to the next, hoping to see some progress.

Julia was with me when I got the news and she, too, showed emotion and relief. When we called Suz all she could say was Oh My God, OMG, OMG.

And so we continue forward. The next month will be spent primarily at the hospital/clinic since the drug combo hits my blood counts pretty hard and I'll need numerous transfusions. My situation is delicate and that's probably why Rifkin is guarded in his reaction. He has done a marvelous job working on the myeloma while at the same time preventing me from getting sick.

We are very grateful for all your support.
Peace love light
dan

I've had some difficulties posting on the blog but believe I've finally solved the problem so here's the update. As noted earlier the carfilzomib made me pretty sick and just when I had prepared myself to talk with Rifkin about withdrawing from the trial he told me it wasn't working and we had to switch. Fortunately there was another drug on the shelf--bendamustin, which I started 2 weeks ago. I get 2 infusions every 3 weeks, along with dexamethasone and revlimid for 21 days straight. These drugs push my red cells, white cells and platelets down in the nether regions. That in turn necessitates trips to the hospital for transfusions, at least on a weekly basis. I typically am at the clinic/hospital 5 to 7 days a week. Quite the life. Of course, since I can't drive due to my messed up arm, Susan has to drive me to all appts., and sit and wait as I get treatment. I think her role in all of this is worse.

My left arm is healing, albeit very slowly. I can touch my left finger to my nose! Reminds me of which, as kids, we used to try to touch our noses with our tongues. I couldn't do that either.

I wish I could paint a different picture, but we're dealing with some very difficult issues. It seems there aren't any treatments left. It's all complicated by my nonfunctioning bone marrow. From my perspective it is extremely frustrating as I would do anything to keep going. So we let the bendamustin treatment shine a ray of light and keep us moving forward.

Peace, light and love to all.
Dan

Carfilzomib Bites the Dust

Visit with Rikin this week. I've built up anxiety about my need to discuss continuing the carfilzomib trial. The drug has been very hard on my muscles and bones. But Rifkin is three steps ahead of me. He's already concluded the drug is not working and has an abstract of another new drug he wants me to start on (bentamustin). My Doc from MDA who moved to NYC talked with us about that drug when we were in NYC in August. It's new in its application to myeloma, but has shown some success in treating lymphoma. Since giving it to me would be "off label" we have to get preapproval from my insurance company. Off label merely means it would be used for a purpose other than that approved by the FDA--treating myeloma rather than lymphoma.

The last month I've had to deal with a significant lesion in my upper left arm. The lesion is a result of the myeloma eating away at my bones. Cancer cells essentially replace bone, making the bones weak, to the point of fracture. That was the concern as they xrayed my arm, put me in a sling, and subjected me to 5 days of radiation to kill some of the myeloma and make way for bone growth. Getting on and off the steel table for the radiaion treatments was the most difficult part of this, given my messed up back. But, like all these treatments, I survived and am very glad that is over.

These are difficult times as we continue to search for some longer term relief and try to ignore my decline as well as the short list of new drugs that might be available.

Thank you everyone for your continued support.

Love,

Dan

Bone Marrow Results

Bone marrow results are in. Best I can describe them is mixed. There has been no progression of the disease over the 2 months I've been on carfilzomib. There also has been no reduction in the disease levels, i.e., no response. Absolutely Stable are the words Rifkin repeatedly used. That means two more cycles of carfilzomib (2 more months). In the meantime Rifkin is looking for the next drug should I continue not to respond after two more cycles. He's seeking expanded access on pomalidomide and is investigating a new drug that has shown much success in treating other blood cancers. We're also trying to deal with my bone pain, nerve pain, and weakened muscles, whether caused by the drug or the myeloma. Not so much fun. It seems that the rest of the time I'm at the hospital getting red cells and platelets. But I'm not complaining; I'm glad to be alive and to have a doctor who refuses to give up and mostly for those many friends and family members who keep me going every day. Thank you.
Dan

Starting Cycle 2

I had essentially 2 weeks off between cycles. In those 2 weeks my back went into serious spasm. I attributed it to coming off the steroids and expected it would improve before I started the second cycle. No such luck. The burning pain radiates around from the back through the lower ribs and also through the chest. Xray on Friday reveals no change from previous films except more arthritis. Fortunately this eliminates the concern about spinal cord impingement but doesn't answer the cause of this latest limitation. Trying to use pain killers but so far vicodin and percocet don't touch it. My own analysis is its pinched nerves from the multiple compression fractures.

Started the second cycle of carfilzomib this week, Thurs and Fri. I don't notice many side effects other than the fatigue. But the chemo hits my blood counts hard (red cells and platelets) which cause me to go to the hospital for multiple transfusions. For example, I received chemo Thursday p.m., then blood and platelets on Friday morning, went to the clinic for another dose of chemo and discovered I needed another 2 units of blood. Back to the hospital and another 12 hour day. Same thing happened 2 weeks ago. Julia and Bob have given up their Friday nights to bring me dinner on these Friday nights and keep me company. Very sweet.

No news on whether carfilzomib is working. Should know by late October/early November.

Dan

Light the Night plus Carfilzomib Update

LIGHT THE NIGHT

As many of you know the Light the Night walk for the Leukemia and Lymphoma Society will take place Thursday, Sept. 22 at Wash Park in Denver. All walkers on my team are invited to a prewalk party at Darin and Liz Schanker's home, 818 S. Franklin, directly to the east of Wash Park, sponsored by Darin's law firm, Bachus and Schanker. The prewalk party starts at 4:30 p.m. and the walk will start around 7 p.m. Please come out and walk to help bring awareness to the need for a cure for blood cancers. Donations can be made at

http://pages.lightthenight.org/rm/DenverL11/dpatterson_LTN

In the four years that I have participated in the walk we (you!) have raised more than $89,000. That is a huge amount of money for one team to raise. I am very grateful for all of your support over the years. The monies go to blood cancer research, patient services and financial assistance for patients.

CARFILZOMIB

I have been the beneficiary of a number of new drugs that have been developed with the help of LLS research monies. Velcade was one of those drugs. Carfilzomib may be another (not sure). These research monies are critical because 1. drug companies do not typically become involved in initial research but rather wait until drugs show promise through government or private funding before they become involved, and 2. many blood cancers, especially multiple myeloma, become drug resistant and therefore new drugs are necessary to keep the cancer in check.

I started on carfilzomib last week. I receive 2 doses a week, along with dexamethasone. Carfilzomib is similar to velcade, i.e., a proteinase inhibitor, with the benefit of showing efficacy after velcade has failed. That being where I am: velcade no longer works on me. Carfilzomib is about the last drug out there for me so we're keeping our fingers crossed. I'll have bone marrow biopsy the end of October to measure the progress. So far, no significant side effects.

My blood counts have been so low, particularly my platelets that I've had a series of nosebleeds. The last one lasted more than a week (yes, 10 days) and required packing my nose for 3 days (not fun) and even that didn't work. Monday's transfusion of blood and platelets seems to have put an end to that nonsense. Ever try walking around with a balloon in your nose and a tube coming out of your nose and taped across your cheek? I wouldn't recommend it.

Hope to see many of you on the 22nd at Light the Night. Thank you again for all you have done and continue to do for my family and me.
Love to all of you,
Dan