Relapsed High Risk Myeloma - Update July 2 2013

Jani and I arranged to have Andrea Marinac come and stay at the house with our 3 dogs and her cute little dog, Koko since we were anticipatingag a 2-day stay in Twin Falls, Idaho with a motel stay to begin Cycle 3 of Bendamustine, Revlimid 5mg/Dex 40 mg. 

My chart below may not be correct - I have to study the original documents.

We arrived in Twin Falls just in time for my 9:40 AM appointment. Everything was running late in the MSTI Infusion Center. Had my blood drawn and then we waited in the examine room while they searched for the results of my bone marrow biopsy done 26 June 2013.

Dr. Padavanija came in and said the bone marrow biopsy results weren't any better - at least 95% and/or 100% plasma cells. However, the M-Spike had dropped from 1.3 to 1.2. I didn't get any hard paper copies of the bone marrow biopsy results and will have to wait until next week.

My white blood cell count (fights infection) is low, but okay for me at 1.9 (norms 4.5-11); ANC (absolute neutrophil count determines if I should wear a mask or not) is low, but okay for me at 1.24 (norms for 1.9 to 4.8); platelets MISERABLY LOW at 17 (norms 140-440) and I have not been on any chemo for the last week. They don't like to intervene with a platelet transfusion until the platelets drop below 10 because you make antibodies against platelets and they only last 1-2 days in your body; They did not draw a LDH today.

My Chem Panel was good for my kidney function - continued mild kidney failure.

I continued back to the MSTI Infusion Room for my monthly Aredia 30 mg intravenously. I remembered to take my Claritin and Tylenol by mouth. This always helps the aches and pains that Aredia can cause post-infusion. They cannot tell you take Claritin/Tylenol because no evidence based (research) data exists on its use - but, IT has ALWAYS helped me with Zometa, Aredia, and Neupogen infusions.

While I was infusion, Dr. Padavanija called Clay Smith, MD at the University of Colorado Hospital. He was involved in an emergency, but did get back to Dr. Padvanija. Since the Bendamustine/Revlimid/Dex doesn't seem to be working, they decided I should switch to:

Option: carfilzomib intravenously 2 days in a row/pomalidomide 21 out or 28 days orally/dex 40 mg weekly

I've been on both of these chemotherapy medications before, but not in his combo.

Summary of Chemotherapy Agents I've Had Since Diagnosis 23 Months Ago:

1. Revlimid (lenalidomide)
2. Velcade (bortezomib) 
3. Decadron (dexamethasone)
4. Thalidomide (took a couple of days and discontinued due to neuro complications)
5. Cisplastin
6. Adriamycin
7. Cytoxan
8. Etoposide
9. Carmustine
10. Cytarabine
11. Melphalan
12. Vorinostat (Zolinza)
13. Carfilzomib (Kyprolis)
14. Pomalidomide (Pomalyst)
15. Bendamustine
16. Carfilzomib Kyprolis)/Pomalidomide (Pomalyst)/Dex

I will still require "rescue blood and platelet transfusions as my platelets are not not likely to recover on this chemo cocktail. They will have to get my medical insurance approval first. That, along with 4th of July 2013 Holiday probably will delay the start until next week. The carfilzomib (Kyprolis) is given intravenously 2 days in a row and the pomalidomide (Pomalyst) is given by mouth for 21 out of 28 days.

After the Aredia ran intravenously, Jani and I went to get my hair cut. My hair has been looking like a very messed up Einstein look.

Taco Bell and Shopko. I needed shorts for a "michelin-tire-sized" girl.

On the way home, we saw a grass fire near Richfield, Idaho, called the Jim Brown Fire (below).

Then, once in our Big Lost River Valley, there was a larger fire just south of the King Mountain roads (I think they are calling it the Beaver Creek Fire). It was raining north of the fire in Leslie, Idaho - so, hopefully the moisture will go south and put the fire out.

My post-hair cut look once home - my post-chemo hair continues to have its own curl and fuzz to it, so it is HARD to control - but, my ugly Einstein look is better.

We had dropped Jonah off at M&C Lube for an oil change when we left town, so we stopped so I could pick him up and drove him home.

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 13 2013

Still feeling the energy effects of my extra red blood cells, I drove my father to Bingham Memorial Hospital in Blackfoot, Idaho (85 miles each way) for a follow-up ultrasound of the arterial stents in his groin and legs. 

I did lots of waiting in the car and we were gone all day.

Thankfully, Dad's stents are still open allowing blood flow to his lower legs and feet.. There has been some narrowing in the stent area flow since his last assessment 6 months ago. Dr. Shelley will want to check the stents again in 5 months or sooner if he has any PAIN. If the stents have narrowed further or meet some number Dr. Shelley measures on the ultrasound, Dad would have to have another procedure done around mid-November 2013. Before the arterial stents were placed, Dad had swelling of the lower legs and feet which we thought were congestive heart failure - not the case. The arterial stents have solved all of the lower leg and feet swelling.

We were back in Mackay by 4:30 PM. I was very tired, had some dinner and and went to bed at 7 PM. I have a pain in my left frontal sinus area - hopefully, it is not infected again. No nasal drainage, so it is hard to tell. Could be from the blood transfusion.

Today is Day 13 of Cycle 2 Bendamustine/Revlimid 5 mg/ Dex 10 mg every other day.

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.

Relapsed High Risk Myeloma - Update June 10 2013

Our friends from Colorado, Ali and Patti, packed up and departed Mackay mid-morning. 

I was going to go get the mail for Paco, but I was tired and Jani went for me.

Spent all day one-with-the-sofa, so I'm pretty sure my hemoglobin (oxygen-carrying cells) is dropping from the Cycle 2, Day 1 and 2 bendamustine (this is Day 7 since I received it).

St. Luke's Hospital Scheduling called and made my appointment for my next conscious sedation bone marrow biopsy (my 12th in 25 months) for Wed, 26 Jun 2013 with Dr. Peterson.  I'm taking it as a good sign that they even want to know how my bone marrow is doing on bendamustine.

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

I continue to feel well in the early morning and then EXHAUSTED after lunch. Bilateral hip pain and continued, diverse gut aches. And in fairness, I think I have more than a "touch of chemobrain" of late. I've been trying to help Jani finish up the Mt. McCaleb Cemetery veteran's by rows list and without Jani - it would be a MESS.

Relapsed High Risk Myeloma - Update June 6 2013

Slept pretty well last night if I don't dwell on how upset my stomach was - sorry, whine, whine, whine. The intravenous Bendamustine dries my mouth and tongue out, alters my taste buds significantly, and gives me a moderate sore throat. I think, I remember having all of this during Cycle 1 Bendamustine too - but, I cannot find any documentation of it in my blog.

Worked all morning on getting "lists" made of things I need to get done with my paperwork, bills, etc. Just when I think I have it all worked out, I think of something else. Don't want to leave Jani and my family with a paper mess. Met with the Mackay Fire Department Chief, Randy Ivie, to share with him the IDAHO POST NOTE (singed by my oncologist, Jani, and I) - a document that indicates I do not want to be transported out of Mackay if I cannot speak for myself. 

Randy and I  had a good visit. He and his family have been friends forever in my memory. Randy was the EMT with my Gram, Hazel Lundberg, when she died in October 1985 and Randy's son, Justin, was the paper boy that found my Uncle Rex Lundberg passed away in his home in December 1991.

I went for mail and had really nice visits with a number of friends in front of the Post Office. I love that Mackay people take the time to visit and no one "really seems in a hurry".

Kenadi called me from St. Luke's Hospital in Twin Falls, Idaho this morning to tell me my SPEP was ready.Stopped at the Mackay Library and picked up my faxed SPEP Results from the blood drawn 4 June 2013. RN  My M-Spike is still 1.3, but has a  note that it was in the "gamma region", when I have always had "kappa region" myeloma. I'll have to study my past M-Spike reports and call Dr. Padavanija to figure this out.  More on the free lights, immunoglobulins tomorrow.

Beautiful lilac bush in full bloom by the Mackay Library. Our spring and summer weather usually does not arrive until now - so, we are right on time.

Jani worked all day on my lawn with the string trimmer and mowing the two wild habitant fields I have on either side of my house.

Somewhere in there, I squeezed in a two hour nap on the sofa after lunch...slept hard and probably snored LOUDLY~

My Barton Flat Churndasher Ranch Johnson family stopped by with  a treat for me - red licorice! They also had 2 sleeping baby grandsons, Otto, age 2, and Owen, age almost 2 months, in the back seat with the cutest 3 year old granddaughter babysitter, Kinley, in the middle. Kinley has the brightest light eyes - SO CUTE! Their other two granddaughters, Kelsey and Kassidy stayed on the ranch to help their Dad tonight. I've known this family for my whole life and I love watching them grow!

Jani and I went to the Mackay Outlaw Dinner Theatre tonight at the school.  The dinner was pizza and spaghetti. The monies raised are used to put on the annual Halloween Carnival for the school kids each year. The play entitled, "Every Little Crook and Nanny" was terrific fun and the cast did such a nice job with the production. I laughed a lot and that CANNOT BE BAD! Sitting in stadium-like auditorium chairs was hard on me for 2 hours!

I sat next to good friend, Cora Lockie and Lana Pehrson on the other side (missed getting her photo). This is the FIRST activity that I have attempted and completed in the evening in MONTHS and MONTHS. My back hurt from all the sitting in the stadium-like chairs, but I made it through the entire performance. 

Relapsed High Risk Myeloma - Update June 5 2013

Threw up in the night - no nausea, just a "surprise emesis".  Still no nausea, but my gastritis is back.

Checked out of the motel in Twin Falls and arrived on time for my 8 AM St . Luke's Hospital Day 2 of intravenous Bendamustine. Pharmacist Dave thought it would be best that I went back to intravenously Aloxi for pre-treatment vs. intravenous Kytril, so we did that along with 10 mg of Dex intravenously.

We were at the Infusion Center way too long for a 30 minute Benadmustine infusion and no lab draw today, but I think they are short of nurses right now (maybe for vacation, etc). Oh well, I was patient and didn't let the delay get to me like I can some times do!

I slept almost all the way home in the back of Bart (2006 Honda Pilot) while Jani drove. I'm pretty sure Aloxi makes me tired. We stopped at the Lost Rivers Drug Store in Arco, Idaho to buy a couple of pill strip box organizers - it is the only way I can keep track of my medications and if I've taken then or not.

We stopped at the Chevron to put gas in Bart...always try to keep it filled on the advice of my mother many years ago - if you need to leave Mackay and the Big Lost RIver Valley, it is always good to be prepared with a full tank of gas.

Stopped to say hi to Paco and give him his shopping items from Twin Falls. He took care of 12-year old Kady-the-golden retriever, while Clark and Dianne Parker took are of Kemmer and Zoe. All 3 dogs were exhausted when we got home.

 emmer and Clark surveying a beaver downed tree on Kid's Creek which borders the back of their property.

Jani's after haircut look.

I might try to have my hair cut in Twin Falls the next time we go. It is still VERY CURLY and won't comb in to any style I'm formerly used to.......

Jani got this great photo of the mule deer behind my house tonight. I never tire of seeing the, but they aren't eating "my hay" either.

Relapsed High-Risk Myeloma Update - Cycle 2 Bendamustine Day 1 - June 4 2013

Jani drove me to St. Luke's Hospital in Twin Falls, Idaho this morning. Trouble with my GI tract moving SOUTH way too quickly, but I took some Imodium once I arrived at St. Luke's Hospital.

They drew my SPEP blood values today which I should have the final results by the end of the week. All of the SPEP myeloma tests are sent out for processing. 

My known lab values were better today. My white blood cell count (WBC) was up to 5.4 which is NORMAL! (nomrs 4.5-11). My ANC (absolute neutrophil count) is NORMAL TOO at 3.97 (norms 1.9-8.8); hemoglobin 9.6 which is low, but not low enough to require a packed red blood cell transplant (norms 12-16) - my blood transfusion threshold is 9.0 or lower.

Unfortunately, my LDH peaked upward to 1349 (norms 313-618) from 735 on 21 May 2013. Not sure what this might mean and neither did Dr. Padavanija, but it probably isn't good.

My chem panel lab values are pretty good, with just mild kidney failure values for BUN and BUN/Creatinine Ratio

Jani and I met with Dr. Padavanija and she thinks I should continue on with the bendamustine Cycle 2, as well as the Aredia 30 mg IV (bone building medication) today. RN Melisa was terrific getting every thing hung, but I did spend from 10 AM to 3 PM in the Infusion Room. Jani went shopping and I slept in the Infusion Center recliner. 

The bendamustine has a 2 1/2 week until nadir (lowest blood values), so I can expect low hemoglobin and platelets again - probably requiring blood transfusions - so, we will probably have several trips back here to Twin Falls. I'll get my blood tested at the Lost Rivers Medical Center in Arco each week and if the values are too low, will continue on to Twin Falls for the transfusions.

Had a good visit with St. Luke's Hospital Nutritionist Alisa who grew up in Kemmerer, Wyoming - my Kemmer's namesake. Both she and Dr. Padavanija recommended that I start on probioics, which support your health immune system, boost digestion and restore the natural balance of good bacteria in your digestive tract.

They didn't recommend a specific brand of Probiotic, but Jani bought this one.

Checked in to the Quality Inn in Twin Falls (a terrific place to stay with terrible internet access) so I can get my second dose of bendamustine tomorrrow at 8 AM. Bendamustine is given intravenously Day 1 and Day 2 of each Cycle. Then, we will head back to Mackay tomorrow 5 Jun 2013.

Jani and I went to Target so I could get some larger t-shirts for my Michelin-Tire-Me!

Had take out from Taco Bell and came back to the motel to eat. Then, Jani went to get her hair cut at the Twin Falls Mall - turned out nicely. Pre-photos before haircut. Post-photos tomorrow.

Jani has a lot more beauty aids than Kemmer and I.

My hair products today, however, I have spent most of the last 2 years bald, which I didn't mind at all.

Kemmer's hair products - she is easy and is so good in the shower.

We sat in the hot tub at the Quality Inn - I liked it a lot - with my Bard Power Port, which is implanted under the skin of my right chest wall - it is no problem going swimming or in a hot tub.