karl&myeloma

One man's experience with multiple myeloma

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.

Amen.

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

    one

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.

Amen.

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.

Amen.

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.

Amen.

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.

Amen.

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.

Amen.

November 20, 2013

Today is ASCT +35. Five weeks post transplant.

Yesterday I saw the Nurse Practitioner, Pepita Jean. I received permission to go back to work part time starting today. I worked 3 hours today and we’ll see how I do tomorrow.

My numbers remain very good as far as CBC and Metabolic Panel go. I won’t be checked for myeloma numbers for another 2 months.

Appetite remains OK and nausea seems to be gone. Both Pepita and a nurse believe that I am among the fastest progressing patients they have seen. I can only attribute this to your prayers.

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

Amen.

November 16, 2013

Today is ASCT +31.

It seems as though I have really turned a corner over the last few days. I am up to 150 Lbs. Last night I had a hankering for knockwurst and sauerkraut with a beer and some bread & butter pickles. Boy was that good. The night before was pork cutlets parmigiana. Not bad, eh?

Today, Kathleen and I went out shopping to Costco and Whole Foods. We were out for about three hours. Came back a little tired but otherwise feeling OK. Tonight will be roast chicken with roasted potatoes.

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

Amen.

November 13, 2013

Today is ASCT +28 or 4 weeks since I received my stem cells back.

The Nausea is not quite gone. Oh well! But it does remain much reduced from where it was last week. I seem to need something for the nausea most evenings and otherwise not during the day.

Finally seem to be rid of the constipation I had been suffering since the end of last week. Now I have to keep things soft and loose enough so this does not happen again. So I must eat the right foods. Only, food is strange. How am I supposed to do this?

Food is a strange thing for me these days. I frequently recall something I used to like very much and when I get it, all it seems I can eat is a too small amount. One exception on Sunday, was pork cutlets. This I did enjoy – to a point – which is why this is all so strange. Thought I’d have some hot milk with Ovaltine this evening – got half way through the cup and needed to stop and have an anti-nausea med.

I think I’ve mentioned to you before that sometimes I really do feel as though I’ve gone down a rabbit hole and gotten lost.

In the meantime, I really am doing better each day. Some days are more measurable than others.

Thank you, Lord Jesus, for my healing, and thank you for the healing received in others we pray for: Pia, Barbara, Herma, Berris, Sylvia, Nicola, Mike, Joe, and the people of the Philippines.

Amen.

November 11, 2013

Today is ASCT +26. It is also Veteran’s Day and to honor all of our veterans. Thank you all!

While on this subject, I’d like to pay particular attention to our women in the Armed Forces and let you know that I support current efforts in Congress to change the Uniform Code to provide for equality in justice for all.

For a poignant and more light-hearted take en this subject you should give a listen to Liz Mandeville’s tune “My Mama Wears Combat Boots” off her album “Clarksdale”. On the same album, and very touching is “A Soldiers Wife”.

I’ve been hesitant to talk about this but it appears that the worst of my nausea is gone. I haven’t needed an anti-nausea med since Saturday. Praise be to God!

I still have trouble eating very much, but it also seems that my weight is holding at -22 pounds. Now, you know there is a silver lining to all this, I really would prefer to settle in at 154 to 159 Lbs. This means I can gain 7 Lbs. Perhaps when my appetite returns 😉 .

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

Amen