Relapsed High Risk Myeloma - Update July 20 2013

Woke feeling much better, no more leg cramps, no gut acid, no headache and I did sleep some of the night.

Was able to shower, go get the mail and deliver it to my father. My hair is beginning to look more like it did when I was diagnosed May 2011.

Jani's partner, Robbyn Wacker, arrived in a rental car from the Idaho Falls Airport. She flew here from Colorado and is spending the weekend with us.

The forest fire smoke north of us cleared for the afternoon and we sat on the front porch and then returned THICK for the evening and night. We've ordered a replaced filter for my hepa filter and it should arrive Tuesday...non soon enough!

I spent the rest of the day one-with-my-sofa watching golf and finishing up Part 1 of my Gram's History (Hazel Theora Jensen Anderson Lundberg). She was born in Mt. Pleasant, Utah, married in 1911, and relocated to Idaho after that until her death in 1985. She was one of the finest people in the WORLD and well-loved by all.

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.

Updates April 27-28 2013

Feeling pretty well. Decided to go watch Johnson's branding for awhile Saturday morning 27 Apr 2013. The calves looked so little. I didn't stay long because of the dust in the air.

Came home and slept most of the afternoon.

Today, 28 Apr 2013, I had a lot more energy, showered, did 2 loads of laundry, and worked several hours on scanning genealogy files. 

Have a bit of a sinus headache and took 1/2 of pain pill. My bone marrow biopsy site of 26 Apr 2013 continues to be sore. The radiating pain I had down my left leg comes and goes, but I think it is getting better. Harder waiting for the results.

Cora made me some potato salad and Earl delivered it -  yum! Had a nice visit from Vickie Mae.

Then, I walked Kemmer slowly for quite a ways on the BLM Road South on the Mine HIll.

 At least I was out in the sunlight for almost 40 minutes, which is good for Vitamin D.

 Found a penny that my M sent, I'm sure.

Did the grocery shopping at Ivies and bought dill pickles for the leg cramps. Visited my father for awhile. Came home to work on the computer some more. Had a slight bloody nose, so my platelets must still be way too low.

High-Risk-Relapsed Update - April 13 2013

Up this morning with my continued left-sided headache and neck ache, but it is more intense than it has been all week - probably because we are having snow, wind, and rain here in Mackay, Idaho now. 

I had to take 1/2 pain pill for the pain and have spent most of my time on the sofa watching the Tiger Woods controversy at the Masters Tournament - he probably wishes he could have the other half of my pain pill!

I emailed Clay Smith, MD, University of Colorado Hospital with my recent issues and he responded directly back. He is in agreement to hold the pomalidomide for now. I will be seeing Dr. Smith in Aurora, Colorado on 16 Apr 2013 to figure out what he referred to as "my complicated case". 

The Myeloma Beacon had an interesting article about pomalidomide (pomalyst) and its performance with high-risk-relapsed myeloma like I have. Here is the link if anyone is interested:

http://www.myelomabeacon.com/news/2013/04/10/pomalyst-low-dose-dexamethasone-high-risk-relapsed-myeloma-imw-2013/

I'm coming off the 40 mg of weekly dex today. I took 10 mg daily for 4 days. I hope today, Sunday and Monday go okay before I start again with 10 mg on Tuesday. I'm really fat from steroids (dex) and maybe a little more emotionally liable - but, not bad. However, my appetite is out-of-control - tying to eat just protein.

I'm still a tad short of breath with walking around the house today. I had cramps in my feet and left calf during the night. My resting pulse is about 82 and if I stand up, it instantly goes to 94, but my oxygen level is great at 96.

The floater deal in my right eye continues to float in to my visual field and sometimes shakes.

My 13-year old Christmas cactus is blooming this morning - well, at least one bloom is blooming. Thanks Jim and Irene!

Cycle 2 Pomalidomide For Relapse Update - April 8 2013

Kemmer had her 5th Birthday on April 6 2013. She is the BEST dog!

I've had a couple of better days. Was able to walk Kemmer a bit even though my heart rate soars because my hemoglobin is 8 point something.

Winter has returned to the Big Lost River valley - which is normal - our week of spring-like weather last week was UNUSUAL.

I think I've figured out how Pomalidomide (Pomalyst) is effecting me. I take it at night on an empty stomach as recommended now (no food 2 hours prior or 2 hours after). I have to admit that I wasn't careful about that prior to Cycle 2. 

Taking Pomalyst in this way has really reduced the amount of GI upset I experience.  Pomalyst caused my upper GI tract to distend and did not allow for normal emptying of my stomach resulting in belching, reflux, and abdominal pain radiating to my back. It also stopped the peristalsis in my lower GI tract resulting in constipation. I have been able to control the constipation with Senna-S and Phillips Tablets each night.  I have tried to avoid ANY pain pills as they would only contribute to my decreased gut motility. I am careful to drink LOTS of water each day - 2,000 to 3,000 ml.

I'm pretty sure Pomalyst causes my daily left-sided neck and head pain too.

Today, April 8th is my best day all week because I'm on the recovery time from Dex 40 mg. I'm supposed to take Dex 40 mg each Tuesday (tomorrow). I've decided that I'm going to spread out the 40 mg dose over 4 days this week to see how that works for me. 

Summary January 23 to January 29 2013

January 23-24 2013: Was bothered with a headache and did do much other than get the mail and work on my medical deductions for my taxes. Increased my water intake for the headache and took plain Tylenol. We have been having HIGH WINDS and freezing temperatures of late, so I couldn't walk Kemmer.

January 25 2013: I've had somewhat more energy today - either that or I JUST WANT TO HAVE MORE ENERGY. I ran the Denver Marathon (26.2 miles in 4 hours 32 minutes) when I was younger and I've always said, being active is more than 90 percent mental and the rest physical - you do what you THINK you'll do. I walked Kemmer today 0.54 miles for the first time in eons. It was bright and sunny - good for my Vitamin D.

January 26 2013: New snow here in Mackay overtime and all clouded over. Looking up Mackay Main Street toward the Lost River Range.

January 27 2013: Walked Kemmer 0.82 miles this afternoon to and from my father's house here in town. We just strolled along, but it was great to be out and about.

January 28 2013: Walked Kemmer to the Big Lost River Smelter Bridge (1.28 miles) this afternoon. She loves this walk. It is great to be a leash-less dog here.

 I continue with my WILD HAIR and tired look. January 28 2013.

January 29 2013: Snowing again in Mackay - still working on those medical deductions for my taxes - could be my lifetime achievement award if I ever get them done. I shoveled snow at my father's house and used the snowblower at my house. It was a good workout for me and had a nice nadir afterwards. Looking up Highway 93 North from Mackay Main Street.

Aredia 30 mg vs 90 mg Dosage Experience

I have been receiving Aredia 90 mg intravenously once a month for bone building. I've had terrible side effects lasting up to 4 days after each infusion including headache, aches all over, and severe fatigue. I tried taking Claritin on the the day of the infusion and it helped the aches to some degree, but not the headache. I complained that I was no longer willing to lose a week per month to Aredia. 

One of my blog readers, Terry from New Jersey, commented that he had gone to a reduced dosage of 30 mg as a result of a study published in the Lancet October 2010 by the Nordic Myeloma Study Group[  http://www.thelancet.com/journals/lanonc/article/PIIS1470-2045%2810%2970198-4/abstract

I shared the study with my oncologists and on 2 Jan 2013 and I received the the lower 30 mg dosage. I took Claritin for insurance. On this day, I also received 20 mg of Dex IV with my IV carfilzomib, IV cytoxan, and Revlimid 10 mg by mouth, so this isn't a true test of just Aredia.

However, the day of the Aredia infusion, I felt fine. I woke the next morning feeling well. By evening, I developed a headache (all over type) and low back aches. I took plain Tylenol and had a nap. I woke from the nap without headache, but the low back ache persisted until the next day and then was gone. 

So, overall, I did a LOT BETTER with the 30 mg vs 90 mg dosage of Aredia (pamidronate).

Walked Kemmer 0.8 miles at noon - nearly 30 degrees today January 6 2013.

2nd ASCT - Day 109 - September 5 2012

I did NOT sleep well and finally got up at 4 AM and worked on my family ancestry files. I did not wake with the headache and my back ache seemed almost gone too. And my stomach doesn't hurt any more than usual.

One of the things I found recently was an article about my grandparent's, Hazel and Maple Lundberg's wedding reception after their marriage 1 November 1911 in Mt. Pleasant, Utah.

The article says they were presented with a rocker upholstered with leather and I have that rocker! The upholstered leather seat is torn and worn - but, it is original. Isn't that neat?

2nd ASCT - Day 20 - June 7 2012

I'm still kicking' ...but, it has been rough for the last 3 days with unrelenting headache, gut ache, and various other aches and pains...oops, I could be whining!


Finally, figured out that I had a sinus infection and once I started Augmentin (antibiotic), my sinuses began to drain and the never-ending headache went away. During the last 3 days, I couldn't really see to type. My vision has really changed with this 2nd transplant. I need to wear much stronger reading glasses now (2.00), and I should probably buy some 2.25 readers. Was using just 1.25 before transplant.


Just when I thought I was turning the corner, last night EVERYTHING came north out of nowhere. I am still taking Kytril once every 24 hours.

2nd ASCT - Day 13 - May 31 2012

Jani made me breakfast in bed. My stomach is still upset, but I was able to eat most of the eggs and toast. Our hotel room consists of 2 bedrooms with baths and a central kitchen and living area. We didn't need to go anyplace today and I spent the majority of the day in bed with that ongoing headache and acid stomach!

2nd ASCT - Day 12 - Discharge from UCH to Marriott Residence Inn May 30 2012

My cousin, Diane Dynia Miller came by to help Jani with the discharge stuff. We had lots of stuff after 20 days in the hospital. I had a terrible headache, but I smiled for the photos despite feeling like crap.

Jani packed up my 1126 UCH Room and were discharged by RN Jen at 3 PM - right on schedule. I did not wheel that cart.

We drove to the Marriott Residence Inn and checked in, Diane and Jani brought all our stuff in and I went to bed with an ice bag on my aching head. Diane stayed with me in the room while Jani went to the grocery store.

UCH Hospital in relationship to Marriott Residence Inn

2nd ASCT - Day 10 - May 28 2012

My stem cells have engrafted. My white blood cell count is up to 0.7. However, I have a terrible, ongoing  headache probably from neupogen which has slowed my blogging. Look back for more posts if the dang headache EVER gives up.

They disconnected me from all of my maintenance intravenous fluids and now I have to drink all my builds by mouth. Good buy IV pole.

2nd ASCT - Day 7 - Pain - May 25 2012

I developed a new pain tonight, May 25 2012. I have a right sided headache that extends to my right orbit and upper jaw. I do not feel like it is a migraine headache as I have not had one in years. RN Emily suggested that it could be Neupogen pain and I'm inclined to agree with her. I did take the Claritin at 3 PM today, but it is no guarantee. They have given me an ice pack and that seems to help.


RN Jamie gave me plain tylenol early morning May 25 2012 and within an hour, my gripping facial pain ceased! It was wonderful. I had a good day without any pain after that. Dr. Gutman thinks the pain may be Neupogen related, but he does not think it is anything serious.

Day 19 Update - October 2 2011

Woke with the continued sinus pressure and headache between my eyes. I took a Percocet and it helped a little, but did not relieve the headache. Just before noon, decided I better call the Bone Marrow Transplant Nurse Practitioner on call to see if this was significant. No fever, my termperature is 99.6.  I have a long history of sinus infections and have had several sinus operations, so I'm not new to this rodeo~

Nurse Practitioner Carlie called me back and instructed me to take Augmentin that I already have from the VDT-PACE hospital discharge. They will take a look at me tomorrow at my blood draw appointment.

Day 18 - Blood Test Update - October 1 2011

Faye Hummel drove me from The Timbers to my 8:15 AM appointment to have my blood tested at the University of Colorado Cancer Infusion Center. I was happily surprised to see Dana Godec, RN working there and I was her patient :).

Happily, my weight is down to 149. I weighed 140 pounds when I was diagnosed with multiple myeloma on May 24 2011. I weighed 150 on admission for the stem cell transplant on September 12 2011. On discharge from the hospital on September 27 2011, I was up to 158 pounds. They told me it was retained fluid and it must have been, as I've been peeing like a race horse and my weight is down!

We didn't have to wait long for the blood results probably because it is Saturday. My white blood cell count is up to 4.1 which is awesome, but you cannot really believe that number since I was given Neupogen on Thursday, 9/29/2011 and it may reflect a "false high". The next time I get my blood drawn which will be Monday, October 3rd or Day 20 will be more reflective of my actual bone marrow function.

My platelets were up to 56 which is wonderful as Neuopogen doesn't really affect their production. Nurse Dana said a value over 50 meant that my platelets have engrafted in my bone marrow - YIPPEE ~ Now, before you get too excited, 56 is still way too low (150 to 400 is the norm), but I'm on my way.

My hemoglobin is 10.5, so I am still anemic (norm is 12.1 to 16.3), but I'll take it~

All of my electrolytes were normal except for a low normal potassium at 3.3 (norms 3.3-5.0), so I had to take 40 mg of potassium pills (thankfully, easy to swallow).

My protein and albumin levels aren't as good as Day 16 (last night measured at 6.2 and 3.6), but they are reflective that I am eating meals with protein at 5.9 and 3.7. Thank you caregivers Jan Martin and Faye Hummel !!!!!!!!!!!!!!!!!!!!!!!!!!

We were in and out of there in 1 hour flat - a miracle considering my previous appointments!

I have a bit of a sinus-like frontal headache (just between my eyes), so I took a Claritin which seemed to help. Don't know if I should have done that, but they do let me take Claritin when I get Neuopogen shots, so, who knows - I'll ask at my next appointment on Monday.

Neuopogen Injections Day 4 or 4 August 15 2011

I gave myself the two Neuopogen injections this morning (300 mg and 480 mg) and took the Claritin tablet. In addition, I  flushed my Trifusion Hickman Catheter with Heparin Flush Solution.
I've had a headache and still do this morning, but it is not bad.

Couldn't sleep last night and had a slight headache July 6 2011

I couldn't sleep last night after my 1st dose of Velcade with Decadron and Aloxi in Cycle 2 and Revlimid on July 5 2011. I felt tired, but just couldn't fall asleep. I also had a slight headache which went away after I used an ice pack to the back of my neck and my forehead.