One man's experience with multiple myeloma

Tag: Blood Work

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 11, 2012

Day 5 of 9 with no cytotoxics or steroids.

The lower leg pain had dropped to 2 this morning.  Discussed all these side effects with Warren.  We agreed to a revised dosing schedule.  Starting August, I would receive the Velcade only on Mondays for 3 weeks in a row, followed by a week off.  For this 5th cycle starting next week in July, I would have 3 doses, the 16th, 19th and 23rd.

Warren said that lower leg pain is not a typical presentation of peripheral neuropathy, but not impossible that it is related.

Blood samples were taken to check to see where I am on improving numbers.  Those results will be available next week, probably the 19th.

June 28, 2012

Day 4 of dosing cycle 4 – second dosing

7:30 AM – Took my dexamethasone and acyclovir along with my vitamins at breakfast.

9:50 AM – Arrived at Lynn Cancer Center.

10:00 AM – CBC sample taken by Carolyn.

10:50 AM – Velcade injection given sub-cu by Paula

11:30 AM – Arrived home feeling a little tired, as usual.

I picked up the results of my blood work samples taken last week:

My IgG continues to drop – it is now mid-range of the normal values.

My M-spike or Abnormal Protein Band 1, also continues to drop, it is now at 0.7, having dropped from an initial value of 2.1. The goal is to get this to not detected or 0. Three weeks ago it was 0.9. So it has continued to drop, but not as fast as before. This will undoubtedly mean I will continue into Cycle 5. My CBC results continue to stay in normal range. All-in-all, great progress.

Thank you all for your ongoing thoughts and prayers. They are working and mean so much to me.

June 20, 2012

Happy Summer Solstice!

Day 5 of 9 with no cytotoxics and no steroids.

New blood samples were taken by Constance at Lynn to see how I’ve done after cycle 3.

Then, I had my meeting with Warren today.  He was very pleased with my progress after the first two cycles.  He explained that the “Abnormal Protein Band 1” is the key marker for measuring progress of my myeloma. You may recall that my initial value was 2.1 g/dL.  This dropped to 1.5 after cycle 1 and dropped further to 0.9 after cycle 2.  Once this has dropped to 10% of the original value, I can be said to be ready for stem cell transplant.  Once this value is 0.0 or “none detected” I can then be said to have a complete response.  Then, we can start to measure the free light chains to check for stringent complete response.  For those of you who have heard of “M-protein” or “M-spike”, these terms also refer to the “Abnormal Protein Band 1”.

Regarding the Peripheral Neuropathy (PN) that I’ve been fighting off with my chiropractor and through Spiritual Healing, Warren said that, once I have received a total of 40mg/square meter (the mg refers to milligram – each mg is about 0.000035 ounces, and the square meter refers to the surface area of my body in square meters – each square meter is about 10.7 square feet), then I can expect that any effects of the Velcade causing PN will have reached their plateau and would not get worse.  Each time I’ve had and will have had a dose of Velcade, it’s 1.3mg/square meter.  So, for the 12 doses I’ve had so far, this is equivalent to 15.6mg/square meter or I’m about 39% of the way to that plateau.  Since area of my body is 1.85 square meters, my regular dose is 2.4mg.  Potent drug, huh?  Especially when you compare this to acetaminophen pain reliever where the standard tablet is 325mg and the usual dose is 2 tablets or 650mg.

May 30, 2012

Day 5 of 9 with no cytotoxics or steroids.

Went to work for the past 2 days after the Memorial Day holiday. I have been having some trouble sleeping and, seemingly, as a result, I’ve been tired during the day.

I had my regular appointment with Warren at the Lynn Cancer Center. He said that he was also very pleased with the results of my last blood tests. Additional blood samples were also taken today to see how I’m doing. These results should be available next Monday, 6/4. We discussed the effects of the steroid, dexamethasone. The reason why it’s used is that it has anti-myeloma activity. I asked about trying a lower dose and after some conversation where I described the various effects I’ve been experiencing, Warren suggested that I could try half the original dose or 10mg per day of and after Velcade instead of 20mg. I am very happy to give this a shot.

April 23, 2012

Day 1 of Cycle 1 of CyBorD – exactly 1 month after my official diagnosis.

6:30 AM – Took my cyclophosphamide.

7:35 AM – Took my dexamethasone and acyclovir along with my vitamins at breakfast.

8:25 AM – Arrived at Lynn Infusion Center.

8:40 AM – Blood samples taken by Tonya who seemed to really know her stuff.

9:25 AM – Received bortezomib sub-cu injection from Lyn. She was very kind and supportive.

2:30 PM – Just finished a nice 1-hour nap. Feel much better.

6:00 PM – So far my main side effect appears to be fatigue. I also had some joint pain in my left hip and some warm tingling in my hands and torso that seem to come and go. I also noticed the jitteriness from the dexamethasone that Warren and Lyn warned me about.

April 18, 2012

I met with Warren late in the afternoon, this time without Kathleen.

We discussed various therapies that he thought were appropriate for me in my otherwise healthy condition and being in early Stage I.

He explained that my Blood Work was really not that far off normal.

The first option was RD – Revlimid-Decadron. The advantage of this therapy is that it is entirely oral and that I could presumably continue to take these two drugs for 5 years or more as the typical response was very good and someone as healthy as me could withstand the side effects pretty easily. Having looked up the package insert for Revlimid before coming, I had to admit I was somewhat nervous about the possible side effect of DVT or Deep Vein Thrombosis. Warren said this was usually easily managed with low-dose aspirin. One issue was that sometimes therapy can cause issues with future Stem Cell Transplantation.

The second option was CyBorD – Cytoxin-Velcade-Decadron or cyclophosphamide-bortezomib-dexamethasone. The cyclophosphamide and dexamethasone are both oral tablets and the bortezomib could be given subcutaneously, inject just under the skin. Here, I would take the bortezomib on day 1, 4, 8 and 11, the dexamethosone on day 1, 2, 4, 5, 8, 9, 11, and 12, and the cyclophosphamide on day 1 and 8. This, together with a week off after would constitute 1 cycle and I would need 4 cycles or so before adjusting dosing. The primary side effect on this peripheral neuropathy.

Warren explained I should be able to tolerate either well. After further discussion, I thought that the CyBorD might be better for me. Warren said that he had had a lot of experience with this therapy and that it was one of his go-to therapies, especially for someone such as me with newly diagnosed Myeloma and being in early Stage I.

Warren also said I should be on bisphosphonate therapy as a once monthly injection of Zometa. Before I could do this, I needed a clearance from my dentist. Finally, I would also need io take acyclovir to protect against a shingles attack that can happen on bortezomib therapy.

We agreed that therapy would start Monday, 4/23. He also asked whether David had ordered a 24-hour urine collection test. I said that he had not and had said that he thought that it was not as necessary now with the excellent values that could be obtained via blood tests. Warren said that he disagreed and thought it was important to do this test too because it helps to set a baseline for future assessment. So I got a prescription for this test and for the remaining drugs I would need for therapy. Included in this was a prescription for prochlorperazine for nausea.

April 2, 2012

I saw David to get the results of the Bone Marrow testing, the Bone Survey and the Blood Work.  The diagnosis of Myeloma had been confirmed.

The Bone Marrow results showed I had about 40% myeloma-plasma cells in my marrow, where the normal would be about 3% to 6% plasma cells in the marrow.

The Bone Survey was actually pretty normal as no holes were found in my skeleton.  This was good news.

The Blood Work was more complex.  The good news was that my Calcium was normal and kidney function was normal.  The Albumin was normal.  My Beta-2 Microglobulin was above normal.  The immunoglobulins were off kilter.  A and M were low and G was high.  This is typical for myeloma.

David recommended RVD therapy – a combination of Revlimid, Valcade and Decadron.

Revlimid is the brand name of lenalidomide a newer relative of thalidomide; Valcade is the brand name of bortezomib; and Decadron is the brand name of dexamethasone which is only available today as the generic.

He said it is a well-tolerated therapy, especially for someone such as me, in otherwise good health.  He also said that better than 90% of myeloma patients respond to this therapy.

David also suggested that I see the doctors at the Moffitt Cancer Center in Tampa to discuss Autologous Stem Cell Transplant therapy as an option, because he thought I would be eligible.  He faxed over my records to Moffitt and said they would call to set up an appointment.  He also said that my therapy could wait until I had seen them because I was not that sick.

I told David that I had planned to have a second opinion on treatment and that I would be going to the Lynn Cancer Center in Boca Raton for this.  He was absolutely OK with this, and encouraged it, and arranged to have my records faxed over there as well.  I thanked him for his care and said I would let him know of my decision after I had met with the doctor at Lynn.

March 27, 2012

I met with David, my first hematologist oncologist.  David had blood drawn for some additional tests that needed to be run.  He also took a Bone Marrow sample.  I must say that this was not fun.  Not knowing that he would have given me some drugs to dope me up some if I had someone to drive me afterwords, I had driven by myself.  It wasn’t fun.  Afterwords, it was actually quite weird.  The skin around the the injection was numb from the local anesthetic but the spot in my pelvis from where he took the sample still hurt.  So, as I left his office and called Kathleen to tell her how it went, I told her I had both a sore ass and a numb ass at the same time.  She laughed, because I had meant it to be funny.  David also said I needed a Bone Survey and this was scheduled for 3/30.