Relapsed High Risk Myeloma - Update August 2 2013

Had my blood tested early 2 Aug 2013 at Lost Rivers Medical Center in Arco, Idaho. Surprisingly, my platelets are HOLDING at 16 (norms 140-440). The platelets had been 17 on 30 July 2013. I had my last Cycle 1 Pomalyst (pomalidomide) on 31 July 2013, so I was off all chemo today during the blood draw. Maybe the tandem intravenous carfilzomib and oral Pomalyst is helping me???

My white count isn't too hot at 1.6 with an ANC (absolute neutrophil count which determines how you can be in public or not) at just 0.40 (norms 2-8). They like to see the ANC above 1.0 to be without a mask. I still have not had any of my post- autologous stem cell transplant immunizations like measles, mumps, etc.

My hemoglobin has been sitting between 8-9 (norms 12-16) for the last couple of weeks and was 8.3 today. The threshold they use to give me a packed red blood cell transfusion has been set at 9.0, so I needed a unit of blood today. Jani and I drove right to St. Luke's Hospital in Twin Falls and they drew a type and cross match from my Bard Power Port and ordered my one unit of blood. Jani went shopping and I waited for the irradiates packed red blood cells. RN Janae took very good care of me along with RN Rhonda. The blood finally showed up and as in by 3 PM. I had a nadir in the Infusion Chair.

I felt quite a bit better after the blood transfusion, lots less shortness of breath. AGAIN, thanks to all the volunteer donors of blood and platelets.

History of All Blood Transfusions Since Diagnosis May 24 2011

1. Aug 2 2013 (1 unit)
2. Jun 26 2013 (2 units)
3. Jun 11 2013 (1 unit)
4. May 14 2013 (2 units)
5. May 7 2013
6. Apr 19 2013
7. Apr 10 2013
8. May 16 2012 (2 units)
9. April 2 2012  (2 units)
10. Sept 22 2011 (2 units)
11. Sept 7 2011 (2 units)

History of All Platelet Transfusions Since Diagnosis May 24 2011

1. Platelet Transfusion March 24 2012 (UCH- University of Colorado)
2. Platelet Transfusion March 27 2012 (UCH)
3. Platelet Transfusion March 29 2012 (UCH)
4. Platelet Transfusion March 31 2012 (UCH)
5. Platelet Transfusion May 20 2012 (UCH)
6. Platelet Transfusion May 22 2012 (UCH)
7. Platelet Transfusion May 10 2013 (St. Luke's Hospital)
8. Platelet Transfusion Jul 12 2013 (St. Luke's Hospital)
9. Platelet Transfusion Jul 23 2013 (St. Luke's Hospital)

Jani drove me home to Mackay - I slept most of the way. We arrived in Mackay about 5:45 PM. Jani unloaded Bart and headed to Dad's house to visit with Jeff and Dad for awhile while I was one with the sofa and went to bed at 8 PM.

Relapsed High Risk Myeloma - Update August 1 2013

Guts a'suffering today and nothing seems to help. I have absolutely no energy today and have been one with my sofa ever since I went to get the mail for my father. My resting heart rate is 84, but the minute I'm up and trying to walk slowly in the house, my pulse jumps to 110 and I have shortness of breath.

Working hard on the Ancestry stuff, making a timeline is really helping. 

My brother, Jeff, is arriving from Colorado this afternoon, but I'm just too tired to go over to Dad's for the official greeting. Jani will take a photo.

We have at least one bomb sniffin' dog check each new arrival out.

Going to Lost Rivers Medical Center tomorrow for a blood check. Although I don't think I'll need  platelets because I haven't had any bleeding, I do think I need 1-2 units of packed irradiated red blood cells for ENERGY. I'm quite short of breath with walking right now.

Relapsed High Risk Myeloma - Update July 30 2013

Labs drawn at Lost Rivers Medical Center Lab this morning. They called Dr. Padavanija's office at St. Luke's and we decided that I did NOT need a blood transfusion, nor a platelet transfusion today. My platelets are 17 (norms 140-440) and that is good for me. My hemoglobin is a tad low at 8.8 (norms 12-16), but I usually don't get a blood transfusion until the hemoglobin is well below 9.0.

So, Jani and I drove home to Mackay and we will return to Lost Rivers Medical Center Lab on Friday, 2 August 2013  to have my blood rechecked...happy all around for today. If, on Friday, my values have dropped, we would go on to St. Luke's in Twin Falls and get the necessary transfusions.

I'll just take it easy around here and work on the computer. 

Jani took the dogs on a walk and then went golfing.

And then, I was hit with one of my heart pain attacks.
I was a SEVERE episode of what I call "HEART PAIN". This is the 6th episode of "heart pain" that I've had since my myeloma diagnosis (24 May 2011). At least 2 of the episodes have been witnessed by nurses and doctors at the University of Colorado Hospital in Aurora, Colorado.

1. 30 July 2013 (here in Mackay, Idaho)
2. 19 June 2013 (here Mackay, Idaho)
3. 24 May 2012 (while inpatient at UCH for 2nd autologous stem cell transplant)
4. 18 April 2012 (in Greeley, Colorado at Jani and Robbyn's house)
5. 17 Jan 2012 (here in Mackay, Idaho and Ron took me to Idaho Falls ER)
6. 15 Sept 2011 (while inpatient at UCH for 1st autologous stem cell transplant)

These episodes of "heart pain" are ALL SIMILAR and resemble what I image a heart attack would be like. I have severe pain along a circumference band just below both breasts and radiates up to my right jaw line and teeth. It is terrible pain and takes my breath away. I feel some better if I sit up , but not really. Since I've had 2 of these episodes while hospitalized a the University of Colorado witnessed by the nurses and doctors, I sort of know what to do when it happens. In those episodes, they worked me up heart attack with EKG, heart ultrasound, lung CT Scan, and blood tests and everything was normal. 

Tonight, I took:

1. Famiciclovir (shingles prevention which was due at 2 PM)
2. Pepcid 20 mg
3. 1/4 Percocet and 1/2 Oxy 325
4. AND a BIG DOSE - "stay clam Jude, you are not dying"

The entire episode lasted just about 45 minutes and then I was essentially fine, but TIRED.

I remember reading on the Multiple Myeloma Beacon (http://www.myelomabeacon.com FORUM section about other myeloma patients experiencing similar episodes when taking Revlimid (although, I am taking Pomalyst now) and being treated in emergency rooms, only to be told nothing was wrong with them. Here is the link: http://www.myelomabeacon.com/forum/chest-pain-as-a-side-effect-of-revlimid-or-velcade-t1700.html?hilit=chest%20pain

I liken these "heart pain" episodes to something VERY SIMILAR to the spasms and cramps I get in my legs at times. Terrible spasm pain followed by aching pain followed by "normal" (whatever that is). But with the "heart pain", there seems to be little I an do to "stretch" the pain away. It is SCARY and PAINFUL. And, I had a very bad night.

Relapsed High Risk Myeloma - Update July 26 2013

Slept pretty well in the motel - but, I had taken 2 1/2 Imodium which makes me tired. Unfortunately, I had a tad of bleeding from the back of my throat and rectal area. They are sending me home with stool sampling materials - oh joy ~

Arrived at St. Luke's Hospital MSTI for our 8:20 AM appointment. They decided to draw a CBC and a CHEM Panel and we had to wait for those results and then a consult via the RN from Dr. Padavanija who was seeing clinic patients on whether I could receive my carfilzomid chemo today...this took a long time and Jani left to find breakfast somewhere.

My white blood cell count has dropped to 1.7 (norms 4.5-11); ANC to below 1.0 to 0.66 which is not good and might have held my carfilzomib chemo; my hemoglobin dropped to 8.6 and I could have had a red blood cell transfusion, but decided against it for now. MY platelets dropped from 37 of yesterday to 21 today and they said I could have more platelets if I wanted them too, but I didn't want to wait around all day for that either, so declined.

My chem panel was essentialy normal and my mild kidney failure, if all, is MILD.

I go to Lost Rivers Medical Center Lab on 30 July 2013 and will get my blood tested. Depending on the results,  I will probably need both red blood cells and platelets on that day at St. Luke's in Twin Falls - but, at least, we'll be prepared to wait that day.  If I decide to stop the transfusions, it probably would not  take long for me to die.

My brain is cloudy at times which I attribute to the anti-nausea medication Kytril...but, I'm still able to blog and do my ancestry stuff.

Relapsed High Risk Myeloma - Update July 25 2013

Up early and off we go in Bart to St. Luke's Hospital in Twin Falls arriving for our 9:40 AM appointment.

My blood draw results: WBC 2.4 (norms 4.5-11); ANC 1.23 (norms 1.9-8.8); hemoglobin 9.8 (norms 12-15); and platelets 37 - YES YOUR ARE READING CORRECTLY - 37. Don't know how that happened, but I did get a platelet transfusion on 23 July 2013 and those platelets may be hanging around....

My LDH has soared upward again to 2731 (norms 313-618), so that's no good.

I received my intravenous carfilzomib and po (by mouth) pomolidamide, and 10 mg Dex orally. The carfilzomib requires pre and post intravenous fluids. So, we didn't depart St. Luke's until nearly 2 PM.

The Olsen's are watching our dogs for us. Alex is playing with the crutches and his cousin, Kenley looks on with Zoe who loves little boys and children, in general.

Tucker Olsen and Zoe greet.

Jani and I went to Walgreens to get a prescription. And then we checked in to a new motel.

Jani went out for Wendy's and I had a TERRIBLE CASE of the ZAPS (everything going SOUTH QUICKLY in LARGE amounts FREQUENTLY. Fortunately, I had some extra clothes, but I called Jani and she went to the store for MORE SUPPLIES. Sure glad I had a caregiver today!!

Relapsed High Risk Myeloma - Update July 19 2013

Couldn't sleep at all in the motel. Finally turned my computer on at 2 AM and worked on a genealogy chart for my Gram's side of the family. Tried hard not to wake Jani, but did at least one time.

My guts were not burning at all - it helps to sit up more than lie down...but, probably not that good to stay up ALL NIGHT!

Got up early to arrive at St. Luke's Hospital MSTI for my 7:40 AM blood draw (CBC only). Had some trouble with my Bard Power Port and it bruised.

My platelets were only 12 (not so good) and if I lived in Twin Falls, I might have waited around for a platelet transfusion. I will wait and go to Lost Rivers Medical Center in Arco and get my blood tested Monday morning, 22 July 2013. Then, if my platelets and/or hemoglobin are low, we'll call St. Luke's and probably drive to Twin Falls in the afternoon for either/or a platelet or packed red blood cell transfusion. It takes St. Luke's Hospital in Twin Falls all day to get platelets from a blood bank in Boise and once they arrive they have to irradiated before they can be given to me. 

RN Vicki gave me my intravenous Kytril, carfilzomib along with pre and post fluids. The carfilzomib, along with the oral pomalidomide that I take are expected to lower my platelet count. Hopefully, I will not bleed. Intravenous push Kytril makes me very tired, but has pretty much eliminated the burning gut I've had without it.

Jani went shopping for some cold food items to put in our cooler while I got my chemo.
We were on our way home 10:30 AM arriving just before 1 PM.

Once home, I felt TERRIBLE. Had an all over headache, but, especially  over my eyes and forehead. My legs (calves) were in spasm and nothing helped that. I tried to nap and could not. The burning neuropathy pain I have in my left leg from my toes to my groin bothered me, but, the neuropathy pain that has recently developed in my right heel is most bothersome - feels like I'm stepping on a hot iron all the time. I remained in this uncomfortable way all afternoon, evening, and night - MISERABLE...okay, I am WHINING NOW!

Forest fires have broken out north of us AGAIN this summer - known as the Papoose, Bradley, and Lodgepine Fires and our Big Lost River Valley had filled with fire smoke - I HATE THIS and I'll probably be back in a N-95 mask again to be outside.

Relapsed High Risk Myeloma - Update July 18 2013

Just at morning twilight, I saw Maynard's cow and 2 calves chasing a female moose from the middle of their field behind me toward the river willows. They were really going FAST!

Andrea Marinac is watching our pups with her little Koko. Here she is with Zoe.

Jani drove me to Twin Falls, St. Luke's Hospital MSTI this morning. I slept most of the way in the back of Bart. I had awakened with a headache and a left sinus pressure and drainage. I took my 10 mg of Dex orally before I left home.

RN Leita drew my labs out of my Bard Power Port. Then, we waited in the examination room for our appointment with Dr. Pandavanja. My lab values have improved slightly! My wbc are 3.8 (norms 4.5-11); ANC 2.29 (norms 1.9-8.8); hemoglobin 11.2 (norms 12-1); platelets 17 (norms 140-440). So, an increase of 5 platelets is very good news for me!

My kidney function tests are a tad off with creatinine at 1.07 (norms 0.52-1.04); high BUN at 26 (norms 7-18) and GFR only 55. So, I have some type of kidney failure.

I received my intravenous dose of carfilzomib with a pre-treatment of Kytril with pre and post fluids. I spoke with Pharmacist Dave about the Kytril and he thought it best I get some.

We discussed with Dr. Padavanija not to increase the carfilzomib dosage from the original metered square dosage and I was in a agreement. Dr. Padavanija ordered a Z-Pack antibiotic for my sinuses and we will pick those up at the pharmacy on the way to check in to the motel later this afternoon.

The intravenous Kytril (anti-nausea) push medication made me very tired. I knew it would! I react to almost all medications. We went to Walmart and wandered around...I was fine if I held on to the cart handle. Jani had a list and we FOLLOWED IT!

Checked in to the motel where the air-conditioning was comfortable since it was nearly100 degrees outside in Twin Falls. We both had nadirs and went to Taco Bell drive-through for dinner.

Jani sat in the motel hot tub and then went to McDonald's for some soft-serve ice cream for us. I took my Zantac and Prilosec and was off to bed. My guts are burning some, but not that badly.

Relapsed High Risk Myeloma - Update June 26 2013

Up at o'dark thirty to depart at 4:45 AM (that's early folks) for St. Luke's Hospital in Twin Falls, Idaho. I slept the whole way there while Jani drove. Was pretty much out of breath as I walked from the parking lot to the Infusion Center.

Had my labs drawn from my Bard Power Port as soon as we arrived just after 7 AM in the MSTI Infusion Center. Drew CBC, Chem Panel, LDH, and SPEP.

Then off to Interventional Radiology for my 12th bone marrow biopsy since diagnosis (24 May 2011). 
Bone Marrow Biopsy History:

1. 24 May 2011 (Diagnosis, Dr. Moore in Ft. Collins, Colorado; traditional trocar)
2. 20 Aug 2011 (1st at UCH with Glen, NP; traditional trocar)
3. 1 Sept 2011 (Karley, NP, UCH, traditional trocar)
4. 2 Nov 2011  (Karley, NP, UCH, tradition trocar)
5. 9 Mar 2012  (Karley, NP and 1st with OnControl Driver, UCH)
6. 3 May 2012 (Shannon, NP with OnControl Driver, UCH)
7. 12 July 2012 (Trish, NP with OnControl Driver UCH)
8. 17 Oct 2012 (Angela, NP with OnControl Driver UCH)
9. 20 Dec 2012 (Kirk Peterson, MD, St. Luke's Hospital, Twin Falls, Idaho) Conscious Sedation; traditional trocar
10. 20 Feb 2013 (Kirk Peterson, MD, St. Luke's Hospital, Twin Falls, Idaho) Conscious Sedation; traditional trocar
11. 26 Apr 2013 (John Gray, MD, St. Luke's Hospital, Twin Falls, Idaho) Conscious Sedation; traditional trocar
12. 26 Jun 2013 (Kirk Peterson, MD. St. Luke's Hospital, Twin Falls, Idaho) Conscious Sedation; traditional trocar

RN Mendi was there to greet Jani and I. My tongue was so DRY and STUCK to the roof of my mouth from being NPO (nothing by mouth) since midnight that it was difficult to articulate. 

My CBC and Chem Panel results came back and and were all LOW.  White blood cell count low at 1.8 (norms 4.5-11); ANC (absolute neutrophil count) low at 1.18 (norms 1.90-8.8); platelets LOW at 28 (norms 140-440); and hemoglobin REALLY LOW at 7.3 (norms 12-16) - no wonder I was out of breath with the walk from the parking lot to the hospital.

My LDH was 1040 which was down from 1349 (norms 313-618) which I'll take as a good sign!

My SPEP results will take a week, although, I'm pretty sure I'll be able to get my M-Spike result by this Friday, 28 Jun 2013.

My Chem Panel wasn't too bad, still showing mild kidney failure with a creatinine of 1.09 (norms 0.52-1.04); BUN 18 (norms 7-17) and GFR 54 (norm greater than 60).

RN Mendi had to make a number of phone calls to determine if I was going to have the bone marrow biopsy 1st, followed by 2 units of blood transfusion or the blood transfusion followed by by the bone marrow biopsy. 

Kirk Peterson, MD Pathology decided to do the bone marrow biopsy first under conscious sedation (5 mg Versed and 100 mg  Fentanyl). 

Then send me back to MSTI Infusion Center via a wheelchair for 2 units of packed red blood cells transfusion and 10 mg of lasix. I was drugged from the conscious sedation and napped off and on while I got my blood. The 10 mg of lasix helped to reduce my "michelin tire look".

I'm pretty sure my left frontal sinus infection is back, so the nurse called Dr. Padavanija and got a Z-Pack prescription for me which I'll start tomorrow.

Jani went shopping with a long list at several stores.

We left Twin Falls at  3:45 PM. I felt AWFUL...every bone in my body stiff, headache, terrible burning gastritis, and sleepy. It was a Dex 10 mg day and I hadn't taken it until I got home. As much as the Dex swells me up - it does help my aches and pains. Plus Dex actually treats myeloma. Went to bed feeling ROTTEN ROTTEN...Jani checked on me several times.

My GI tract is in the rapidly south mode and I took some Imodium.

History of All Blood Transfusions Since Diagnosis May 24 2011

1. Jun 26 2013 (2 units)
2. Jun 11 2013 (1 unit)
3. May 14 2013 (2 units)
4. May 7 2013
5. Apr 19 2013
6. Apr 10 2013
7. May 16 2012 (2 units)
8. April 2 2012  (2 units)
9. Sept 22 2011 (2 units)
10. Sept 7 2011 (2 units)

Relapsed High Risk Myeloma - Update June 18 2013

Did not sleep well last night, woke with left calf spasm and took 1/4 pain pill which seems to be hanging me over this morning.

Jani drove me to Lost Rivers Medical Center Lab in Arco, Idaho to have my CBC (complete blood count) done this morning. My white blood cell count fell from 2.7 to 2.0 (norms 4.5-11); ANC (absolute neutrophil count) and fell from 1.82 to 1.11 (norms 1.9-8.8). So, I probably should avoid hugging others for a while.

My hemoglobin is about the same as it was last week (8.2) before I had at transfusion of one unit of packed red blood cells at 8.5 today (norms 12-16). My platelets actually increased a TINY BIT from 28 to 33 (norms 140-440). Will continue to hold my aspirin 81 mg dose due to low platelets.

I'm not experiencing any shortness of breath with walking slowly right now, so decided that I did not need another transfusion of packed red blood cells today. 

Still need to be super careful with such a low platelet count.that I don't do anything that might cause me to bleed.

Will call triage nurse at St. Luke's Hospital in Twin Falls, Idaho if I develop any symptoms of severe low hemoglobin (oxygen carrying cells) or bleed from low platelets over the next week. My next appointment is not until Wednesday, 26 June 2013 for labs, and a bone marrow biopsy under conscious sedation. 

During my 1st Cycle of Bendamustine/Revlimid/Dex, my blood values stopped falling about 2 1/2 weeks after it was given and I'm on Day 15 of Cycle 2 today. Hence, I don't expect my blood values to drop much more for this 2nd Cycle.

My on-again to STOPPED gastrointestinal tract is on-again today. I never know, but glad to not be on the road to Twin Falls with it on-again right now.

A friend with myeloma as relapsed and that's not good news.

Relapsed High Risk Myeloma - Update June 14 2013

Well, pretending that my hemoglobin was somewhere near normal (12-16) after my red blood cell transfusion on 11 June 2013 hasn't worked so well for me today, 14 June 2013.  My hemoglobin is probably somewhere near 9.0. I'm TIRED and never even got out of pjs all day. Jani did all my usual chores - going for the mail and delivering it to Dad and a trip to the grocery store. I did manage to fold some laundry.

My bones hurt all over, especially my back in the area across my scapula. The pain is achy in nature and requires pain medication...probably from all those plasma cells in my bone marrow (last measured at 95%). My left frontal sinus area still hurts, but is much improved over the last two days. After dinner tonight, my stomach was TERRIBLE and I almost threw up several times - don't know where that is originating from, but I wish it would go away.

I worked on organizing all of the important papers that I keep for my father and putting sticky notes on every thing so Jani can make sense of things at some point.

Jani took the crawl space covers off and carefully labeled the parts so they can be returned to the window wells this coming fall. She is going to glue the metal covers on this summer and then we can eliminate the clamps. You might remember that Jane Koeckeritz helped me get these covers on last October 2012 when she came to Mackay to help me drive to a doctor's appointment at the University of Colorado Hospital.

My long time buddy, Kase Hainline, came to visit this afternoon and brought us a rainbow trout he had just caught in the Big Lost River.

I've known Kase since I used to help in his Preschool Class,  Sept 12 2006.

Jani walked the dogs on the Mine Hill this afternoon - they are such photo hounds. Kemmer and Zoe below.

We just tell them to line up for a photo and 9 out of 10 times they do on their own. Kemmer, Kady, and Zoe below.

Our weather is supposed to be LESS WINDY and WARMER (70 something) tomorrow, so despite how I feel, I'm getting OUT and ABOUT.

Relapsed High Risk Myeloma - 1 Unit Packed Red Blood Cells Transfusion - Update June 11 2013

Had a night of bilateral hip ACHES SUPREME. Finally took 1/4 of a pain pill and then followed by another 1/4. I wish I knew why my hips hurts so badly. The MRI I had on them 28 Feb 2013 was completely normal - but, they feel like they could come out of the socket if I were not careful.

At 7:30 AM, I drove Jonah (1999 Honda Passport) to Arco to have the air-conditioning looked at, while Jani drove Bart (2006 Honda Pilot) to pick me up and take me up to the lab at the Lost Rivers Medical Center for a CBC (complete blood count).

My white blood cell count has dropped to 2.7 from 5.4 (norms 4.5-11) since I had the Cycle 2 Bendamustine Day 1 and 2 on 4 and 5 June 2013. My ANC (absolute neutrophil count) has also dropped to 1.82 from 3.97 (norms 1.9-8.8, but close enough not to have to wear a mask. My hemoglobin dropped to 8.2 from 9.6 (norms 12-16) and since my threshold for packed red blood cell transfusion is set at 9.0, we drove to St. Luke's Hospital in Twin Falls for one unit of packed red blood cells; after 1 unit of packed red blood cells, I should not be as breathless as I have been with walking; my platelets also dropped to 28 from 45 (norms 140-440), but I won't have to worry about a platelet transfusion until my platelets go less than 10 or I begin to  bleed.

The MSTI cancer center infusion center was full today, so they sent me over to another outpatient Infusion Center at St. Luke's Hospital where they mostly give intravenous anti-arthritis and osteoporosis  drugs. 

Jani went to the cafeteria and got me a hamburger and her a chicken sandwich. We shared one ordered of french fries. Then, Jani went shopping and to get her hair cut again.

It is a long process to get the blood transfusion because they have to draw blood for a type and cross (takes an hour to complete in the lab here); order the correct blood (either Type O or A+ in my case); send the blood to radiology to irradiated because of my 2 failed autologous stem cell transplants); deliver it to the Infusion Center; hook it up to a pump and blood warmer device; and then let it run in over a 2-hour period (their protocol minimum time for 1 unit). They hung the blood right at 1 PM and ran it through my Bard Power Port located under the skin of my right chest wall.

 Lots of packed red blood cells being dripped and pumped in to my port.

I have Type A+ blood, but can have O+ blood safely. Again, thanks to all volunteer blood donors.

 Blood warming tubing from the IV pump - that's my laptop on the right.

History of All Blood Transfusions Since Diagnosis May 24 2011

1. Jun 11 2013 (1 unit)
2. May 14 2013 (2 units)
3. May 7 2013
4. Apr 19 2013
5. Apr 10 2013
6. May 16 2012 (2 units)
7. April 2 2012  (2 units)
8. Sept 22 2011 (2 units)
9. Sept 7 2011 (2 units)

We should be able to pick up Jonah with the fixed up air-conditioning on our way home today. Although, I am not all sure how late the place in Arco is open and we are 2 hours drive from Twin Falls to Arco.

With the new red blood cells on board, I should have more energy tomorrow for some sort of adventure with Jani and the dogs tomorrow.