One man's experience with multiple myeloma

Tag: Multiple Myeloma

September 20, 2015

Today is ASCT +705 days, and yes I know it’s been 2 full months since I last posted.  I’m sorry.

This week I will complete my 3rd cycle of Kyprolis on Monday and Tuesday.  So far, so good.

After my second cycle ended in August, my results have continued to come down.  My M-Spike is now 0.46 less than half its June value.  I am now in normal range of IgG, and my Free Light Chain ratio as also been coming down.  My last bone marrow biopsy in June showed total malignant cells at only 6% (less than 5% is considered a complete response if all other values are in their normal ranges.  In short then, I have a low grade disease which is well on its way to being a complete response once again.  This time, I’ll likely continue on a formal maintenance program, most likely (as I can see it now) taking Kyprolis on a reduced schedule.   More blood work next week to see how I have fared after this 3rd cycle.

Getting a needle inserted into one of my veins is becoming increasingly difficult.  I have communicated with Warren that perhaps a port will be better for me now.  It is likely that I’ll be on Kyprolis for some time, especially if I continue with it in a maintenance situation.  Ports, these days, are quire wonderful things and totally unlike the one I needed for my ASCT.  The kind of port I would get would be placed under the skin of my upper chest on one side.  To access it, a nurse feels for the septum under the skin and uses a special needed that goes through my skin and into the port through the septum.  Much less painful than sticking even a 24 gauge needle into a vein.  If I don’t use it for some time, it only needs to be flushed with heparin to insure it has not clogged, once a month.  I’ll get you details when this occurs.

Thank you for being patient with me.

Thank you, Lord Jesus, for my healing and for all the healing received by those for whom we pray.  Amen.

March 24, 2015

Today is ASCT +525 days since my transplant.

It has been 5 months since I last posted.  I meant to post in January and just never made it.

In January, I received the results of my latest set of blood tests and the only remarkable point was that my M-Spike was no longer “not detected” it had climbed to 0.2.  Of course, I’d have preferred that it was still not detected, but in and of itself, not a number to be worried about.

Today I received the results of my latest blood tests and it seems that there has been some progression.  My M-Spike is now 0.5 and my IgG has climbed to normal from below normal while my IgA and IgM dropped to below normal, and my Kappa Free Light Chains are now high as is the Kappa/Lambda ratio.

Warren has scheduled me for a skeletal MRI and a PET/CT scan for this Thursday afternoon to ensure that there is no bone damage going on.  It’s still too early to use the relapse word and we remain watchful.

I’ll let you know the results of the scans when I get the news.

In the meantime, I continue to pray for Bob, Carol, Wayne, Diane, Dianne, Ken, Darla, Pete, Sylvia, Nicola, Berris, Nancy, and Barbara.

Thank you, Lord Jesus, for my healing and the healing of those I pray for.

July 13, 2014

Today is ASCT + 270.

I have been feeling great since the last time I posted. Each week I seem to notice something that is better than it was before. For example, today I noticed that the veins in the back of my hands are seemingly back to normal. Hallelujah! Thanks be to God!

Cancer and it’s treatment are an intriguing thing to go through. Some parts of it take a long time to heal. Since y ASCT, the only ‘drug’ I’ve taken is Curcumin Phytosome (Meriva – Curcumin complexed with phosphatidyl choline – 2 capsules daily, one at night and one in the morning.

I’ve decided to wait for my next checkup on my numbers until I’m on Medicare starting in September. This way, I know all the blood tests are covered.

Thank you all for all your prayers – they have been working overtime. I couldn’t feel better.

Please also pray for Herma, Berris, Sylvia, Nicola, Ken, Wayne, Mother Theodora, Richard, Joe, and all those in the Boca Raton Multiple Myeloma Support Group.

Thank you Lord Jesus, for my healing.


April 29, 2014

Today is ASCT + 195. It is also my beloved Kathleen’s birthday!

Today is the day I’ve been waiting for. My six months post transplant results are where every myeloma patient wants them to be. You may recall that my monoclonal protein or M-Spike from 3 months ago was 0.07 g/dL or 0.26 g/dL depending on whether we were speaking of the new test method or the old method.

Well my new number according to the new method is 0.02 g/dL! Praise be to God! Hallelujah! It’s not 0, but it’s well on the way. I mentioned last time that my transplant doc, Krishna, said I should not expect 0 M-Spike post transplant – that it can take some months to get to 0. Well, clearly, I am on my way.

Most transplant patients start on consolidation therapy or maintenance therapy about 3 months post transplant. l did re-start my curcumin therapy about 1-1/2 months post transplant and that is what I have been on all this time since, 1 capsule 2 times per day of the Meriva version of curcumin.

I will be sending my results of my last testing off to James and to Warren for discussion. At the moment, my view is that the curcumin is doing the job and my druthers are to hold off on more aggressive therapy until such time (perhaps never?) as this may be needed.

Let’s see what they have to say. In the meantime, I feel great. My peripheral neuropathy is basically 0. My life seems almost normal except for the pincushion I became last Wednesday when I received no less than 6 immunizations to protect me since my transplant virtually wiped out this protection. I have more to come over the next 18 months.

Thank you, Lord Jesus, for my healing, and thank you for the healing received by those for whom we pray, Herma, Berris, Wayne, Ken, Joe, Vera, and Frank.


March 2, 2014

Today is +137 days since my transplant – about 4-1/2 months. It’s also Transfiguration Sunday.

It’s been a long time since I posted and I never did give you the results of my M-spike testing. My number was 0.26, which is about 11% of the value I had before I started the carfilzomib & doxorubicin liposomal.

I reviewed these numbers with Dr. Brian Durie at the IMF Patient and Family Seminar this past weekend in Boca Raton, FL. He said that this puts me at very good partial response. And I do need to go on maintenance therapy. He thought the idea of a carfilzomib maintenance made good sense. He suggested 1 dose every 2 weeks.

So I shall take this up with Krishna, James (Berenson) whom I will speak with later this month as well as James Hoffman (a myeloma specialist at Sylvester recommended by Krishna) and, of course, Warren.

All looks very good.

Thank you, Lord Jesus, for my healing and for those for whom we pray, Victor, Barbara, Herma, Berris, Frank, Richard, and Joe.


January 17, 2014

Today is ASCT +94. And no, the M-spike data did not come in yet. 😔

Wow, was I ever way too technical in my last posting. Let’s see if I can break it down. Myeloma is a cancer of the plasma cells. In the blood stream are all sorts of biological chemicals that make up our immune system, such as immunoglobulins that are divided into A, G, or M proteins. One of the typical hallmarks of myeloma is that the cancerous plasma cells typically produce only one of the proteins, most commonly the M protein. This is called a monoclonal protein because the cancerous plasma cells only produce


of the required immunoglobulins instead of all three, which is the reason for the mono in monoclonal protein. The clonal refers to the fact that the cancerous cells are simply reproducing one protein clone instead of the variety of proteins healthy plasma cells produce. This give rise to M-Spike referring to an abnormally high numbers of only one kind of proteins. This M-spike is supposed to be zero or none detected. At it worst, my M-spike was 2.3. This the one value I don’t have yet, but I expect that it is zero.

Here’s why. My oncologist, Warren, has always said that once my M-spike reached zero, he would then test for the other markers such as free light chains. Now the immunoglobulins are regularly tested for myeloma patients, but these are the heavy chain proteins – they are bigger. Most myeloma patients are divided into groups depending on which immunoglobulin they have in excess, A, G, or M. I have been a G, which is most common. My IgG (shorthand for immunoglobulin G) was over 3200 at it’s worst, an my others were low. Now all my immunoglobulins are below normal range. This will sort itself out and normal ranges will be achieved.

Back to the free light chains. These are another variety of proteins involved in the immune system. There are two primary types called kappa or lambda. And again, myeloma patients are typically one or the other, based on which one is in excess. For some patients, the only markers they have are whether they are kappa or lambda; they have no monoclonal protein. This does not mean that their myeloma is any less dangerous – it can still cause a lot of organ damage. The other things oncologists look it is the ratio of kappa to lambda. I am a kappa patient and my ratio of kappa to lambda was 16.03 (normal max of 2.65). Both of my light chains are now below range too, and my ratio is just a smidgen over the max at 2.75!

Back to what’s tested when. When the M-spike reaches zero, and the immunoglobulins are also in range, then doctors will test for free light chains because these are the last to come in range. Once the M-spike is zero and the immunoglobulins are in range, the a patient is considered to be in complete remission. Then a patient is tested for the free light chains, and if these are also now in range, the patient is considered to be in stringent complete remission. This is currently the best that a myeloma patient can hope for.

Well, because both my immunoglobulins are in range, and my free light chains are in range, it seems to me that my M-spike must also be in range. Therefore, concludes me, I must be in stringent complete remission. Has all this made it more understandable? If so you know why I say, Hallelujah! Praise be to God.

Thank you, Lord Jesus, for my healing, and thank you the healing received by others for whom we pray, Hirma, Berris, Nicola, Sylvia, Barbara, Frank, Donna, Irene, Brian, Kevin, Mike, and Joe.


January 15, 2014

Today is ASCT +92. It is also the day I was to get the results from my re-staging.

I have good news and delayed news. The good news is that my kappa and lambda free light light chains are actually both below normal, but the lambda have climbed to the point where the ratio between the two which is supposed to be about 2 is just slightly above normal. These free light chains are usually only tested when the m-spike or monoclonal protein is zero or close. Which leads me to the delayed news that my m-spike number is late arriving and I should have it by Friday. For the free light chains to be in range should mean that my m-spike is zero which would put me in stringent complete remission.

Hallelujah! Praise be to God!

Thank you, Lord Jesus, for my healing, and thank for the healing received by Barbara, Herma, Berris, Frank, Irene, Nicola, Sylvia, and Joe.


January 1, 2014

Today is ASCT +77. It is also New Year’s Day. Happy New Year!

For the first time in a long time, Kathleen and I went out to dinner for our 36th wedding anniversary that was yesterday, New Year’s Eve. We had a good meal at Tavolino Della Nonna. The only problem was a rather rudely loud person at the next table.

The best thing I have to report is that Kris, Kirsten, and Jeph came down from Massachusetts to join us on Christmas Day and stayed 4 nights, returning on Sunday. Kathleen and I really enjoyed their visit. We had a delicious Christmas dinner of standing rib roast, mashed potatoes, and broccoli, with apple pie for dessert with home-made vanilla ice cream. Better than any restaurant that I have found. We followed this with some other good meals, Cacio e Pepe with Caesar Salad, and pork cutlets with buttered noodles. Breakfasts were good too: French toast, waffles, and pancakes, one for each morning. Didn’t need much lunch.

Kirsten arrived with a cold or flu. We gave her, Kris, Jeph lots of time to rest, which they really needed. We watched some movies, and went out to an Asian restaurant on their last night here. It was Jeph’s birthday the day after Christmas and Kirsten and Kathleen made him a chocolate cake, which we all enjoyed with more ice cream.

Apparently, my immune systems must be up and running pretty well. It is now a week later and I have no cold or flu. Yes we did take precautions such as frequent hand washings, paper napkins, and no kissing 😷😟.

I get my blood draw for re-staging in a week and visit Krishna a week later for results. In faith, I expect complete remission.

Thank you, Lord Jesus, for my healing and the healing received by Barbara, Herma, Berris, Nicola, Sylvia, Lily, Mike, and Joe.


December 19, 2013

Today is ASCT +64.

So we’re 2 months past my transplant. Generally I’m feeling pretty good. Had a touch of nausea over this past weekend. It may have been something I ate. Don’t know!

I saw Warren, my hematologist/ oncologist this past Tuesday. He was very happy with my progress. On Wednesday, I saw Krishna who is equally happy. Next month, I’ll have blood samples taken to re-stage my myeloma. Today, I saw my dermatologist who was happy to report that he didn’t have to torture me with the liquid nitrogen spray because he could not find anything that needed removing. I was happier than he was.

I’ve been working full time for the past 2-3 weeks. Surviving quite well. Typically go to bed around 9:30 and sleep to 6:30, usually wanting some more sleep. My rhythm is coming back.

Thank you, Lord Jesus, for my healing, and thank you for the healing received by others for whom we pray: Herma, Berris, Barbara, Frank, Nicola, Sylvia, Mike, Irene, and Joe.


December 1, 2013

Today is ASCT +46. It is also the first Sunday in Advent and the day for our healing service at Saint Andrew’s.

Last Wednesday, I met with Krishna and Pepita for my weekly follow up visit. Basically, I now have permission to eat fresh vegetables that I know have been washed well and eat out at restaurants where I can trust the food. I also have permission to return to work full time. I may still do part time this week and go to full time the following week.

I do still feel stronger each day. It really is true (up to a point that I am careful not to cross – Thanksgiving was an exception) that the more effort I put into a day, the more energy I have for the next day. We had Greg and Vera over for dinner on Thanksgiving. We did our turkey Julia Child style by cutting the turkey into 2 legs and thighs, and 1 piece with both sides of the breast. The breast was brined and started ahead of the rest. It all turned out very well with the breast very tender and juicy. Kathleen and I did all the cutting and prep work on Wednesday night and the cooking Thursday.

Thank you, Lord Jesus, for my healing and thank you for the healing received by those we pray for, Pia, Irene, Herma, Berris, Sylvia, Nicola, Mike, and Joe.