jm's Adventure with Multiple Myeloma: March 2012

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Click on photos to make them larger and clearer. New to the blog, the oldest or beginning entries are at the bottom and you read upwards to the most recent date or go to Labels and begin with Entry 1. Use the alpha Labels on right to find topics of most interest to you.







Saturday, March 31, 2012

Labs and Another Platelet Transfusion - March 31 2012

Ann Henderson drove me to UCH this morning for my labs.
No waiting at all today at UCH - got right in, vitals and blood drawn and sent off to lab. Short wait for  results.

The "white side" of my blood counts (infection fighting) continues to improve upward. My white blood cell count is up to 2.1 (norms 4-11.1), still low, but, much better. 

My platelets for clotting are not holding after each platelet transfusion. They were 30 (norms 150-440) today and I'll be getting my 4th platelet transfusion today since the VDT-PACE chemotherapy from Mar 16-20 2012.

The "red side" of my blood counts (oxygen carrying energy cells) continues to drift downward. Today, my hemoglobin was 8.4 (norm 12.1-16.3). No wonder those walks yesterday were a tad hard for me. At any rate, they do not give blood transfusions for low hemoglobin until the value is 8.0 or lower. However, they are anticipating that my hemoglobin will continue its downward trend and they drew blood for a type and cross match to have 2 units of blood ready for me on Monday, April 2 2012.



My Absolute Neutrophil Count (ANC) is coming up and is at 1.7 today (norms 1.8-7.8), so I can almost be in public with a mask on to go someplace like a store.


These next two tests are the type an cross for the potential blood transfusion on Monday, April 2 2012. I have Type A Positive Blood with a Negative Antibody. When you get a blood transfusion, it is important that that match your blood type.


All of my other lab values are normal in my comprehensive metabolic panel.

 My LDH (inflammation marker) remains low at 94 (norms 98-192).
 My Magnesium is normal at 1.8 (norms 1.3-2.10

 My Phosphorus is normal at 2.7 (norms 2.7-4.4).
 My Uric Acid is normal eat 4.1 (norms 2.6-8.7).

I got my 4th platelet transfusion since my VDT-PACE chemotherapy on Mar 16-20 2012.
  1. Platelet Transfusion March 24 2012
  2. Platelet Transfusion March 27 2012
  3. Platelet Transfusion March 29 2012
  4. Platelet Transfusion March 31 2012

We were in an out of UCH in record time and home just 4 hours 15 minutes after we left Greeley. Jani says I should write this down someplace, as it usually takes much longer...

Friday, March 30, 2012

Walks and Some Red Meat - March 30 2012

I walked twice today. Once for only 0.31 miles - no energy.
Tried the walk again in the afternoon and had to go really slow - but, I made it 0.88 miles. And then had an hour long nap!
 Jani tried to give my red blood cell factory a boost tonight with some steak.

Thursday, March 29, 2012

Neulasta Lift-Off Finally - March 29 2012

My friend, Chuck Henderson, drove me to UCH today to give Jani a break to work on her patience quota. Thanks Chuck!

'


My lab values on the "white side" (infection fighting cells) have started to nudge upward from my bottom of 0.2 to 1.0 today!!!! This is wonderful news. 



On the "red side" (cells that carry oxygen and give you energy), my values are still fading. My hemoglobin is down to 9.1 (norms 12.1-16.3) and my platelets were down to 31 (norms 150-400), so since the value was so close to their 30 or lower standard, I received a 3rd Platelet Transfusion this morning. Thankful for all the blood produce donors I've needed!





In fact, there were enough white blood cells today to allow for a Peripheral Smear to be completed. My Absolute Neutrophil Count (ANC) is up to 0.8 (norms 1.8 to 4.8) which is still too low to be out and about in public without a mask, but much better than the almost 0 it was  just 2 days ago.









 RN Kristin also changed my PICC Line Dressing today.



While I was sitting there, my hair starting coming out in clumps.




So, when I got home, Jani bought some electric clippers and we buzzed my head. We weren't nearly the rookies we were last August 2011 when I went to a Salon to have my hair buzzed followed by Jani's tidying up at home with a razor. 










And the finished product and my quest for the fountain of youth....






My other normal labs from today.



























Wednesday, March 28, 2012

So, How Do I Feel – March 28 2012


Today, I am 13 days post VDT-PACE Cycle 1 following my RELAPSE on 9 March 2012 on Day 178 of my 1st autologous stem cell transplant. My oncologist warned me that the VDT-PACE (an inpatient stay of 96 hours with 7 continuous intravenous chemotherapy agents) would be rougher on me than it was before my autologous stem cell transplant on 13 Sept 2011 AND he wasn’t overstating it.

I could not tolerate the “T” of VDT-PACE or Thalidomide. I was completely disoriented and unable to function. I listed to the right when I walked and needed help to not fall over and It just wasn’t worth it to me, so I discontinued Thalidomide after Day 5 of the VDT-PACE Cycle 1. It took me about 48 hours to get my mind back, but I seem to be thinking clearly now. In addition, the Thalidomide gave me SEVERE neuropathy in my left foot and left leg. It felt like a burning iron on the bottom of my foot and radiated up the back of my leg to my thigh. This very unpleasant sensation improved after I stopped the Thalidomide. I continue to have minor neuropathy on the ends of my fingers and toes experienced mostly as numbness.

All of my bone marrow elements have tanked except for my hemoglobin. My platelets were 15 yesterday requiring a 2nd platelet transfusion and my white blood cell count is only 0.2 or almost non-existent. I was given Neulasta on Day 7 of the VDT-PACE Cycle 1 and it has yet to “kick in” (said to work in 7-10 days, so may be any time now). However, I have experienced quite a bit of back, rib, and hip pain from the Neulasta. Claritin is helping and I should have taken it on the day of the Neulasta injection and then daily thereafter.

I experience headache and neck ache after each platelet transfusion.

My main issues are with gastritis. I had a bad stomach before I had multiple myeloma and all of the treatments hit my gastrointestinal tract with PROLONGED VIGOR. I don’t have any mouth lesions, but I feel lesions in my esophagus just below the back of my throat. My stomach feels better after I eat – so, I eat even though it hurts a tad on the way down. I am constantly aware of an aching gut which isn’t any fun.

I have NO ENERGY and I have trouble maintaining my upright blood pressure if just standing. I’m fine if I’m walking, although I haven’t been walking much.

I get muscle cramps in my left lower leg and foot that jerk me awake in PAIN. Stretching relieves the cramps, but momentarily I think I might DIE.

As my immune system dips, I have been trying to ward off a shingles outbreak with increased doses of famciclovir and have not had any lesions YET – I can feel them just below the surface of the skin experienced as pain and itching. I must have had the BEST CASE of chicken pox as a child…

I'm waiting on my hair to fall out from the Adriamycin portion of the VDT-PACE. When I had VDT-PACE in August 2011, my hair began to fall out on Day 14 after the start of the VDT-PACE which would mean that I can expect my hair to fall out again any time now, but it has not started yet. I'm looking forward to being bald again because I think I look a lot younger bald than I do with this mop of curly GRAY hair. At the rate I'm going, I may never have hair like I'm used to pre-multiple myeloma AGAIN - oh well~ maybe I should replace my blog photo.

And finally, I have the continued worry of my right atrial thrombus (blood clot) in my heart. I hope they come up with a solution for me. I continue daily Fragmin injections at ½ dose of 7,500 IU to thin my blood.

And the ADVENTURE continues.


I walked 0.56 miles this afternoon at a stroll pace, but at least, I was outside.

Tuesday, March 27, 2012

Perhaps "Plummet" Was Used Too Soon - March 27 2012

My white blood cell count continues to drop to 0.2 (norms 4-11.2) along with my platelets at 15 (norms 150-400). Even my hemoglobin is a tad lower to 10.4 (norms 12.1-16.3)

 I had another platelet transfusion today. My platelets increased from 15 to 51.
RN Brooke in the BIC at UCH starting my platelet transfusion. GREAT NURSE!



Despite sores in my throat, I can eat and actually enjoy apples.



Repeat Echocardiogram - March 27 2012


Study ID: 137479

Echocardiography Laboratory
Adult Echocardiography Report

Name: Malkiewicz, Judith A Study Date: 03/27/2012 07:22 AM BP: 122/62 mmHg
MRN: 535166 Patient Location: ECHO HR: 70
DOB: 12/08/1950 Gender: Female Height: 62.5 in
Age: 61 yrs Weight: 163 lb
Reason For Study: Thrombus/heart valve prosthesis 996.71, Right Atrial
Mass BSA: 1.8 m2
Authorizing Physician: Wolfel,
Eugene E

Conclusions
An irregular soft-tissue echodensity is seen in the right atrium, possibly extruding from right atrial catheter tip (see image 53). This suggests a thrombus or vegetation attached to the central line.

Also noted is a prominent eustachian valve, apparently not contiguous with the atrial mass.
Compared to prior study, the following changes are noted: atrial mass better seen on current study.
Recommend transesophageal echo to better visualize catheter tip.

Procedure Summary
A complete two-dimensional transthoracic echocardiogram was performed (2D, M-mode,
Doppler and color flow Doppler). The study was technically limited. Compared to prior
study, the following changes are noted: atrial mass better seen on current study.

Left Ventricle
The left ventricle is normal in size. There is normal left ventricular wall thickness.
Left ventricular systolic function is normal with no regional wall motion abnormalities.
Spectral Doppler of pulmonary veins suggests increased LA pressures.

Right Ventricle
The right ventricle is normal in structure and function.

Atria
The left atrium is normal size. An irregular soft-tissue echodensity is seen in the
right atrium, possibly extruding from right atrial catheter tip (sswe image 53). This
suggests a thrombus or vegetation attached to the central line.
Also noted is a prominent eustachian valve, apparently not contiguous with the atrial
mass.

Mitral Valve
The mitral valve leaflets appear normal. There is no evidence of stenosis, fluttering,
or prolapse. There is trace mitral regurgitation.

Tricuspid Valve
The tricuspid valve leaflets are thin and pliable and the valve motion is normal. There
is mild tricuspid regurgitation. Right ventricular systolic pressure is normal.

Aortic Valve
The aortic valve is tri-leaflet. The aortic valve opens well. There is no aortic
stenosis. No aortic regurgitation is present.

Pulmonic Valve
The pulmonic valve is not well seen, but is grossly normal. There is no pulmonic
valvular stenosis. Mild pulmonic valvular regurgitation.

Great Vessels
The aortic root is normal. The inferior vena cava is normal in size with respiratory
collapse, indicating a right atrial pressure of approximately 3 mmHg.

Pericardium
There is no pericardial effusion.

MMode/2D Measurements and Calculations
IVSd: 0.94 cm LVIDd: 3.6 cm FS: 38.3 % RVDd major: 4.6 cm
LVIDs: 2.2 cm RVDd minor: 2.2 cm
LVPWd: 0.98 cm

_______________________________________________________________________
Ao root diam: asc Aorta Diam: 2.6 cm EDV(MOD-sp4): 59.4 ml EDV(MOD-sp2):
2.5 cm ESV(MOD-sp4): 17.5 ml 42.7 ml
LA dimension: EF(MOD-sp4): 70.4 % ESV(MOD-sp2):
3.0 cm 12.4 ml
EF(MOD-sp2):
71.0 %

_______________________________________________________________________
LAV(MOD-sp4): 29.6 ml EDV index(MOD-bp): RVDd base: 2.9 cm
EDV(MOD-bp): LAV(MOD-sp2): 28.4 ml 28.4 ml/m2
50.1 ml LAV(MOD-bp): 30.8 ml
ESV(MOD-bp): LAV(MOD-bp) index:
14.7 ml 17.5 ml/m2
EF(MOD-bp): 70.7 %

Doppler Measurements and Calculations
MV E max vel: MV dec time: Ao V2 max: LV V1 max PG: 3.8 mmHg
47.4 cm/sec 0.23 sec 137.7 cm/sec LV V1 max: 97.0 cm/sec
MV A max vel: Ao max PG: 7.6 mmHg
58.4 cm/sec
MV E/A: 0.81

_______________________________________________________________________
PA V2 max: TR max PG: 14.6 mmHgRAP systole: Aortic Valve Velocity
104.5 cm/sec RVSP(TR): 17.6 mmHg 3.0 mmHg Ratio: 0.70
PA max PG: 4.4 mmHg

_______________________________________________________________________
E' Lateral Vel: E' Septal Vel: E/E' Lateral: 6.5 E/E' Septal: 6.1
7.3 cm/sec 7.8 cm/sec
_______________________________________________________________________

RV S': 12.8 cm/sec

_________________________________________________________________________________________

Reviewed and Interpreted By: Lawrence Hergott, MD on 03/27/2012 10:03 AM
Sonographers: Noyes, Steven, RCS

Component Results

There is no component information for this result.

General Information

Collected:

3/27/2012 7:22 AM

Resulted:

3/27/2012 9:56 AM

Ordered By:

Eugene E Wolfel, MD

Result Status:

Final result

Sunday, March 25, 2012

Neulasta HURTS - March 25 2012

I had a Neulasta subcutaneous injection on March 22 2012 and I have been suffering with bone and muscle pain in my back, ribs, and hips. I finally remembered that I took Claritin when I was receiving Neupogen pre-autologous stem cell transplant for apheresis to prevent the pain of Neupogen. So, Jani went out at o'dark thirty this morning to get me some Claritin. I really think it helped diminish the pain I've been having that Percocet barely touches. Neulasta is a long acting Neupogen which stimulates the bone marrow to make neutrophils. I just hope the pain I've been experiencing means my bone marrow is pouring out the neutrophils to relieve my neutropenia (low white blood cells making me susceptible to infection).


Walked 0.42 miles this afternoon slowly.

Saturday, March 24, 2012

Labs Plummet and a Platelet Transfusion - March 24 2012

Jani and I left for UCH at sunrise for our 8:15 AM appointment at UCH. It takes us just over an hour to make the trip one way.
They drew my blood out of my PICC Line. It is nice to have line so I don't have to worry about how many pokes it will take to access my blood. We had to wait a LONG TIME for the blood results to come back. I was cozy in the recliner...
 and Jani in the chair...not so much...
My white blood cell is even more CRITICALLY LOW than it was March 22 2012 at 0.5 (norms 4-11.1). My platelets are just 17 (norms 150-400) which will require a platelet transfusion this morning. My hemoglobin hanging in there at low, but okay at 11.0 (norms 12.1-16.3). My absolute neutrophil count (ANC) is dangerously low at 0.3 (norms 1.8-7.8). So, I'm wearing the mask!

The wait for the lab values was probably because they could not do an auto-differential (done with a machine) on the complete blood count (CBC) since there were so FEW white blood cells. It required a peripheral smear which is done by hand via a microscope. My Absolute Neutrophil Count (ANC) is CRITICALLY low at 0.3 (norms 1.8-7.8) so I have to be extra cautious not be exposed to anything.
 My comprehensive metabolic panel was good overall.
 My LDH (lactate dehydrogenase) was good at 117 (norms 98-192).
My serum protein and albumin are getting back to normal which indicates that I am eating well despite my raw gastrointestinal  tract.
They ordered my platelets and RN Christine was very organized and ready to hang them. The platelets that I received today were obtained from a volunteer donor who went through apheresis (hooked to a machine that takes your blood out and separates the platelets from the other components and then replaces the other components back in to the donor). 
It is only suppose to take about 15 minutes for platelets to run in by gravity, but for some reason, mine took more like 45 minutes. I declined the Benadryl that they usually pre-medicate patients receiving transfusions with, but I took the pre-medication Tylenol (650 mg).
RN Christine cautioned me not to bump or cut myself, avoid dental floss, brush with a soft toothbrush, and to call if I got a nose bleed.

We left UCH around 11 AM and drove back o Greeley - I snoozed in the back of Bart on the way home. I don't have to return to UCH until Tuesday, March 27 2012. Hopefully, the Neulasta injection that I received March 22 2012 will have kicked in by then. The Neulasta has certainly caused my back and rib to ache.



Friday, March 23, 2012

Cardiology Consult for Right Atrial Thrombus - March 23 2012

Jan Martin drove me to UCH for my Cardiology Consult with Eugene Wolfel, MD, Cardiology at UCH. Short history: On Day 40 after my 13 September 2011 autologous stem cell transplant, I had an echocardiogram where a large right atrial thrombus (blood clot) was discovered in my heart. At the time, I had both a Trifusion Hickman catheter in my left chest and a Bard Power Port in my right chest. The following day, 3 November 2011, I had an MRI of my Heart which confirmed the right atrial thrombus. I was put on daily Fragmin injections 12,500 units and had both the Trifusion Hickman catheter and the Bard Power Port Removed.

I have been followed with monthly echocardiograms and the right atrial thrombus has decreased some in size, but PERSISTS. 

Concern now as I had a PICC Line placed on 16 March 2012 for my VDT-PACE treatments and it terminates at the right atrium of my heart. Hence, the consult to Dr. Wolfel at UCH.

Jan and I waited for our visit, but not too long.

Dr. Wolfel came in and was well aware of my neutropenic (low white blood cell count) state. He told me that he works with heart transplant patients. Dr. Wolfel was especially kind and was genuinely concerned for my well-being. 
I shared with him my history and I had copies of all my cardiac tests which was a good thing since they did not have a copy of my MRI of the Heart Results.

Dr. Wolfel examined me and listened carefully to my heart. I have a slight systolic murmur.
He wants me to get another echocardiogram and then he will evaluate if I can have pulmonary function tests (part of the pre-autologous stem cell transplant authorization process). I am not a candidate for a trans-esophageal echocardiogram because of my low white count and MRI of the Heart is LONG (2 hours) test that was very hard on me the first time.

I need to continue on Fragmin even though my platelets are low because I still have the potential of clotting even with almost no platelets. He had me sign a release of information so he could get my pre-transplant echocardiograms from Poudre Valley Hospital in Ft. Collins for a baseline done 23 June 2011 and 9 August 2011.

All in all, it was a very good appointment and I trust that Dr. Wolfel will have my best interests at heart.