Summary February 1 to February 5 2013

Feb 1 2013 (Friday): Walked Kemmer 0.82 miles.

Saw a not so lucky porcupine along side the road. They are really cute animals.

Feb 2 2013 (Saturday): Walked Kemmer 1.32 miles to the Big Lost River Smelter Bridge. I had upper back pain across my scapula especially on the right side, so I took ½ Percocet, which really helped. I haven’t taken any Percocet since 20 Dec 2012 when I needed it for my post- Bard Power Port placement. Plain Tylenol has been helping adequately with my leg and back pains. I decided to hold my Fragmin injection, which probably wasn’t a good idea. I took ½ Imodium because I am back on Revlimid 10 mg (Day 4/21) and it always gives me diarrhea.

Feb 3 2013 (Sunday): Walked Kemmer 0.82 miles. 

I took ½ Percocet twice for leg pain and “creepy legs”. Started back on the Fragmin 15,000 units injection. I can take 10 mg of dex on Sunday’s and I decided not to take it since I was able to maintain my walking schedule. I had a little bit of chest pain, especially on the left side, which I attributed to stomach acid. I took Pepcid and felt better even though I take Zantac and Prilosec twice daily on a regular basis. My stomach is ALWAYS a bit upset.

Feb 4 2013 (Monday): Didn’t walk Kemmer today because I used all of my available energy to help at the Mackay Food Bank – filling boxes. I wore gloves and mask the whole time – but, I kept up with everyone. I can't believe they haven't fired me since I've missed so many months.

I decided to take just 7,500 units of Fragmin today since my abdomen is one bigger bruise than it usually is from the injections. I took ½ Percocet twice again in the 24 hours for leg tightness, but I’m sure I do not need it.

Feb 5 2013 (Tuesday): Decided not to take any more Percocet for the time being. I walked Kemmer 0.82 miles. 

Stopped to talk to my neighbor who is here to ice fish on the Mackay Dam…always enjoy our visits.

Used my available energy to vacuum part of the house after a friend carried my inversion table upstairs to get it out of the way. Spent a fair amount of time one-with-my-sofa. In fact, my sofa is a big part of my life every day!

Living in Relapse - January 31 2013

First, a little history - I was diagnosed with high risk monoclonal IgG Kappa multiple myeloma (4:14, 1q21 and other cytogenic changes) when I was 60 years old on 24 May 2011. Aside from anemia and 80% plasma cells in my bone marrow, I was in pretty good shape with normal kidney function and no lytic bone lesions. I was still pretty active, walking the dog in the mountains daily and doing anything I wanted – I was just SLOWER. I had recently turned 60 years old and I thought needing a daily nap might be just a part of aging.

I was prepared for an autologous stem cell transplant (ASCT) with both Velcade and Revlimid which didn’t quite get me to remission, so I required a 4-day hospitalization for VDT-PACE (Velcade, Dex, Thalidomide, Cisplatin, Adriamycin, Cytoxan and Etoposide) prior to donating my stem cells for the transplant which I had on 13 Sept 2011. After my transplant, I had TERRIBLE gastritis for months and developed a blood clot in my heart and it wasn’t as “easy” as it could have been…yet, I kept smiling.

I was so hopeful that I would achieve remission and 50 days post-ASCT my bone marrow did reflect remisson with an M-Spike of 0.1. Immediately, went on weekly maintenance Velcade and Revlimid, which didn’t feel like remission since I had to go for treatment twice a week and it wasn’t long before I relapsed in Feb 2012. Back to 60% plasma cells in my bone marrow and my high risk cytogenetic changes 4:14 and 1q21 persisted.

I was re-admitted for 2 courses of VD-PACE (Velcade, Dex, Cisplatin, Adriamycin, Cytoxan and Etoposide) and prepared for a second ASCT (autologous stem cell transplant), which I had on 18 May 2012. I never achieved remission afterwards and have been living in relapse ever since.

After my failed 2^nd ASCT, I’ve been treated unsuccessfully with Zolinza which did nothing for my myeloma and gave my kidneys a workout. My bone marrow plasma cell percentage went up to 60%.

Being run down from the 2 failed autologous stem cell transplants and no immunoglobulins,  it seems that I react to chemotherapy more deeply than most.

I was started on Carfilzomib, Dex, and Revlimid in Oct 2012.  My bone marrow plasma cells went down to 40% with persistent cytogenetic changes by the end Dec 2012. Added Cytoxan to my chemo plan and my counts plummeted, so that’s in a holding pattern for now.

In addition, I have non-secretory or hypo-secretory myeloma, which means the usual myeloma SPEP (serum protein electrophoresis) blood tests are not reflective of my bone marrow plasma cell percentages. This requires that I be followed by frequent bone marrow biopsies – I’ve had 9 in 19 months. Eight of the 9 bone marrow biopsies have been done without conscious sedation and I have finally convinced the powers to be that I REQUIRE conscious sedation for any future bone marrow biopsies.  Yippee.

So, back to living in relapse!  I'm been doing it for a year now. It is hard knowing each day that you have relapsed myeloma – constantly wondering how your bone marrow is doing, trying to stay off the internet surfing myeloma sites and blogs, yet worrying you might miss some new treatment for high risk myeloma…and simply wondering how much time I might have left. My oncologist already told me that I’ve lived longer than might be expected with my cytogenetic changes, but he added, no one knows. I’m lucky as the approval of new myeloma drugs seem to be coming along just as I need them. So, I keep smiling.

My continuing, weekly chemotherapy keeps me tired, but I try to keep up with my daily activities. I’m best after a dex day. Unlike many, I like dex – seems to give me energy and clarity of thinking that I don’t have otherwise. Unfortunately, the effect does not last.

I worry about getting something from others and I am good about wearing a mask around groups of people and always washing my hands. I have not been sick at all.  I have never been re-hospitalized for any infection. My kidney function returned to normal once all the Zolinza passed through my system and I’m careful to drink plenty of water each day. If I’m going to die, I want it to be of myeloma and not some dumb infection.

I’ve been in a rush to get my family genealogy organized and completed before my time is up. This project is huge and I enjoy it so much. While on the other hand, organizing my medical deductions for my 2012 Taxes is not much fun at all.

Walking my dog, Kemmer, is important to me and I try to do this daily. I like to shovel snow and I’ve been able to do some of that too. I take care of my own house and get my own meals. Trying to fight fatigue with activity, which helps. But, to be honest, right now, the thing I’m best at is “being one with my sofa” working on my laptop and watching television (I’ll miss football and I love golf)…so unlike my active pre-myeloma self.

I have no desire to travel out of Idaho, but do so for my transplant follow-up visits in Colorado. Plus, these trips give me a chance to visit with my former work colleagues. I love when my sister visits in Idaho and I hope she’ll come again soon.

I miss going to the Mackay School to volunteer and watch sporting events. If my Absolute Neutrophil Count (ANC) ever comes up near normal, I’ll return to the school, because I love the children. I’ve tried to keep up my Mackay Food Bank volunteer duties, but I let my Presidency in the South Custer Historical Society go along with my Secretary duties in the Mackay Women’s Club. I keep my Mackay Idaho 83251 blog going http://mackayidaho1.blogspot.com and my jm’s Adventure With Multiple Myeloma blog updated http://jmmultiplemyeloma.blogspot.com 

My mood is good. I don’t suffer from depression. I go to town each day and get the mail for my 92 year-old father. During this trip, I always visit with someone at the Post Office and I like that! Friends have been good about watching Kemmer while I need to away from Mackay. Driving 135 miles each way for my weekly 2 days of chemo is almost relaxing depending on the weather. I like to drive and it is a good thing since I spent 18,701 miles in the car during 2012 JUST for MEDICAL CARE. I’m retired with a monthly income and I have excellent heath insurance, so money has not been an issue.

So, I continue to live in relapse and for the most part – I’m doing a million!

Summary - December 14 to 18 2012

Summing up the last few days and how I feel. I have been EXHAUSTED with a racing heart rate and shortness of breath most of the time when I attempt to be active. My mornings aren't too bad, but by early afternoon - I'm totally "out of gas". Finished Revlimid 10 mg Cycle 2 - 21/28 Days last night, December 17 2012. Took 20 mg of dex this morning to finish Cycle 2. 

I feel quite a bit better since I took the 20 mg of dex this morning. Wish I had more scheduled.  Will be going to St. Luke's Hospital in Twin Falls, Idaho on Thursday, December 20 2012 for the intravenous port placement and bone marrow biopsy.

Well, Kemmer had ANOTHER skunk encounter on the Mine Hill. Jani sprayed her with Nature's Miracle Skunk Off and then showered her in the house. We had to de-skunk the car too - oh joy!

Mackay Idaho from Mine Hill December 15 2012

 Our father, Frank, with his Christmas gifts from Randy and Lisa Mathews in Colorado.

Jani and I went to the Main Street Studio here in Mackay, Idaho to look at the creations of local artists. They were having a weaving demonstration while we were there.

Jani and I made the FAMOUS Grandma Rebein Cookies on December 16 2012.

 Grandma Rebein Cookies are a treat each Christmas!

 We made a table center piece for the holidays....

And then the snow storm came on December 17 2012. Jani cleared the snow at my house and Dad's place with the snow thrower I got for Christmas last year.

 The snow removal SUPERVISORS (below). Zoe, Kady, and Kemmer.

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 1^st 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 2^nd 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.

So, How Do I Feel - January 27 2012

My cold seems to be over and I took my last dose of the 10-day course of Augmentin this morning. Mornings are best for me. I have pretty good energy and manage to get all of my household chores completed and a walk with Kemmer in each morning. I am still bothered by an aching left leg which I'm more aware of each evening and night. I'm taking Tylenol 500 mg for that twice during the night. My acid stomach still bothers me, but a daily dose of Prilosec 40 mg and 150 mg Zantac seems to keep that in check. My skin is extremely dry and living here in ultra-dry Idaho doesn't help - using lots of lotion, Aspercreme ointment, and sunscreen (I use Coppertone Water Babies for children because it does not sting my eyes and right now the only part of me exposed to the sun is my face, neck, and occasionally my hands. The neuropathy in my fingertips continues and is LOTS worse when my hands get cold. By 7 PM each evening my energy is toast and I often fall asleep on the sofa before I go to bed.


Today was another beautiful one in the Big Lost River Valley and I managed to extend my walk to 1.80 miles with a 100 foot gain in elevation (20 degrees with a nice icy wind, but I was dressed appropriately and stayed warm).

Day 17 - So How Do I Feel? September 30 2011

It is Day 17 for my new immune system. So, how do I feel?

I continue to have nausea, but it does not prevent me from eating small frequent meals every 2-3 hours. I take a small dose of Ativan (0.5) if the nausea is really bad. I'm also taking Prilosec and Zantac as needed for my stomach upset. I have been taking Zofran 8 mg every 12 hours for nausea, but have discovered that it gave me a headache - so, I'm weaning off Zofran.

I'm tired and not sleeping well - but, since I can take a nap almost any time - this is not a problem. I have enough energy to shower and go for at least one outside walk per day. Yesterday, I spent 2 1/2 hours at the University of Colorado Outpatient Cancer Clinic in the morning and another 2 1/2 hours at my Dr. Myint appointment - so, it was an exhausting day.

My mood is good and I don't seem to be down at all. I attribute this to being surrounded by positive, caring people - we laugh a lot!!!

jm with new adventure shorts September 28 2011

Summary Report August 30 2011

I was admitted to University of Colorado Hospital for 4 days (8/23-27/2011) receiving the VDT-PACE Regimen of Velcade IV, Dex IV, Thalidomide Oral, Cisplastin IV, Adriamycin IV, Cytoxan IV, and Etoposide IV.

I went yesterday for a blood test and my blood is fine – being stimulated by daily Neupogen injections (total of 780 mg in 2 injections). I’m also giving myself a daily Fragmin (anti-clotting) injection. I’m taking many oral medications too including Claritin (decreases Neupogen bone pain), Ciprofloxacin (antibiotic), Acyclovir (anti-viral), Fluconazole (anti-fungal), Omeprazole (GI distress).

I will have my 3^rd (whose counting?) bone marrow biopsy on 9/1/2011. They are going to try harder to get the results including the cytogenetics back more rapidly, so they will know if my scheduled stem cell harvest will be warranted beginning on 9/6/2011.

If so, I’ll harvest until I give them 10 million cells. (My 1^st harvest yielded about 8 million cells over 3 days which contain 0.8 to 1.2 percent plasma cells – they have saved those cells, but we are hoping for plasma free cells in the 2^nd harvest period).

I will need IV Velcade/Dex on 9/9/2011and will take oral Dex 9/10 and 9/11.

Then, I’m scheduled to be admitted to University of Colorado Hospital on 9/12/2011 for pre-transplant Melphalan IV and Velcade IV with stem cell transplant on 9/13/2011. The medicine on 9/12/2011 wipes out my bone marrow and any cancer that might be hiding and then they give you the stem cells that I harvested the second time.

I’ll be in the hospital at least 2-3 weeks and maybe longer after the stem cell transplant while my bone marrow recovers. After I’m discharged from the hospital, I will have to stay in hotel near the hospital for another 2 weeks, returning to the hospital for frequent tests.