jm's Adventure with Multiple Myeloma: 2nd Opinion

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Showing posts with label 2nd Opinion. Show all posts
Showing posts with label 2nd Opinion. Show all posts

Saturday, November 24, 2012

2nd Opinion Mayo Clinic Scottsdale Summary - November 20 2012



Mayo Clinic in Arizona
                                CLINICAL NOTES
Patient Name:  Malkiewicz, Judith Ms. Service Date:  11/20/2012
Medical Record Number:  76943760
DOB:  December 08, 1950
Age:  61
Service:  Hematology
Facility Name:  MCA
Provider Name:  Rafael Fonseca, M.D.
Visit Type: Consultation
CHIEF COMPLAINT / REASON FOR VISIT:
I am seeing Ms. Malkiewicz in consultation this afternoon for a second opinion regarding further management of multiple myeloma.
HISTORY OF PRESENT ILLNESS:
Ms. Malkiewicz is a delightful 61-year-old woman who has a history of multiple myeloma who has received multiple treatments and comes here for further treatment recommendations.
Past Myeloma History: Ms. Malkiewicz was diagnosed with IgG kappa multiple myeloma on May 24, 2011. At that time, the patient was obtaining a routine physical examination which revealed anemia. A bone marrow showed that she had 80% plasmacytosis with the presence of a t4,14 translocation and deletion of chromosome 13. She had an M-spike of 3.0. The patient received induction therapy with the VRD regimen. She started on June 13, 2011, and did three-and-a-half cycles. Interestingly, the patient had no evidence of lytic bone lesions as is commonly seen in patients with a t4,14 translocation. She also had no evidence of hypercalcemia and had normal renal function. The patient subsequently received treatment at the University of Colorado Hospital with a four-day course of VDT-PACE chemotherapy. The thought behind this was that the patient was showing evidence of a cytogenetic progression with gains of chromosome 1q21. The patient collected stem cells and underwent an autologous stem cell transplant on September 13, 2011. The patient was said to be in a stringent complete response by a bone marrow donor 50 days post her transplant November 2, 2011. At the time, she had an M-spike of 0.1. The patient had a TriFusion Hickman catheter and developed deep venous thrombosis in her atrial appendage as well as the venous system. She had both removed and was placed on low-molecular-weight heparin. Maintenance chemotherapy post the first stem-cell transplant. The patient received treatment with Velcade, dexamethasone, and Revlimid, and also was started on treatment with zoledronic acid which she first received in January of 2011. The patient spent 7 months in Colorado and finally returned home to Mackay, Idaho.
By February of 2011, the patient had a rise in M-spike at 0.59 and was seen back at the University of Colorado Hospital. A biopsy confirmed that she had 50% plasmacytosis with the bone marrow donor in March of 2012. The patient was treated again with VDT-PACE chemotherapy in March of 2012 and received the second cycle in April of the same year. At this point, she had 1% plasmacytosis although she had persistence of genetic changes with 1q21 and t4,14. The patient underwent a second autologous stem-cell transplant May 11, 2012, with beam-induction chemotherapy. The patient returned back home on day 28. Follow up on day 55 on July 12, 2012, showed an M-spike of less than 0.1. The patient, however, still showed abnormal cytogenetics with t4,14 and 1q21 amplification. The patient started, again, chemotherapy with Velcade and dexamethasone on August 20, 2012. The patient did develop peripheral neuropathy which extended at least up to her knees and sometimes she had symptoms up to her groin region. Subsequently, the patient had vorinostat (Zolinza) added to her regimen. The patient did have quite significant toxicity and had to stop the medication. She was also concerned that she had a mild rise in her creatinine which she attributed to the Zolinza. The patient had a repeat bone marrow biopsy done on October 17, 2012. At this point, the patient showed a 60% plasmacytosis. Patient then started with carfilzomib, dexamethasone, and Revlimid at 10 mg on October 30, 2012. The patient comes here for additional recommendations for treatment.
ALLERGIES:
Patient has multiple allergic reactions:
1. Cephalosporin antibiotics which gave her hives. Okay to take penicillin.
2. Quinolones. Severe dizziness and jitteriness.
3. Propofol, cardiac arrhythmias.
4. Latex, skin rash.
5. Tape, severe adhesive allergy.
6. Miconazole, rash and swelling.
7. Clotrimazole, rash and swelling.
8. Vicodin, GI upset.
9. Zyrtec, extreme dizziness.
10. Neurontin, facial and body swelling, prolonged sedation.
11. Benadryl, prolonged sedation.
12. Wools, trees, grasses, and evergreens.
PAST MEDICAL/SURGICAL HISTORY:
Medical History:
1. Myeloma as above.
2. Pneumonia.
3. Hypothyroidism.
4. Elevated cholesterol.
5. Deep venous thrombosis as mentioned before.
6. Peptic ulcer disease.
Surgical History:
1. Fracture of the left humerus in 2002.
2. Sinus surgery times three in 1990s and 2007.
3. Hysterectomy 1978.
4. Right knee times two in 1978 and 2002.
5. Femoral hernia 1978.
SOCIAL HISTORY:
Tobacco: Never.
Alcohol: None.
Recreational drug use: None.
Referring Physician: Dr. Clay Smith from the University of Colorado Hospital in Aurora, Colorado, and Dr. Phatama Padavanija who is at St. Luke's Mountain States Tumor Institute. This is in Twin Falls, Idaho.
FAMILY HISTORY:
Father is alive with heart disease and spinal stenosis at the age of 88 and 91. Mother died at the age of 80 from heart disease, diabetes, and she passed away from lung cancer. The patient has one brother who is alive with high cholesterol and Meniere's disease. One sister who is alive with high cholesterol, and also otosclerosis. She has no children.
REVIEW OF SYSTEMS:
As above.
PHYSICAL EXAM:
Not done during this visit.
IMPRESSION/REPORT/PLAN:
I spent the best part of our visit, 70 minutes, talking about the current status and options for treatment for Ms. Malkiewicz. I believe she still has a few options available for her treatment but at this point I have recommended that she continues in treatment with one more cycle of carfilzomib, Revlimid, and dexamethasone. Unfortunately, it seems like there is a discordance between the level of her protein markers in her blood and the amount of plasmacytosis that she has exhibited. This points toward either a nonsecretor or hyposecretory myeloma. I have told her that I would like for her to complete two cycles and then we can gauge her results. Recently, she has had some drop in her platelet count and her white count so it would be important to know rather soon if she is responding to the treatment or not.
This might only be possibly assessed by repeating a bone marrow examination because her M-spike is currently 0.3 and she has not had elevated serum free light chains. The patient agreed to have laboratory draws done during this visit.
Given the nature of Ms. Malkiewicz's myeloma, I see that she is most afflicted because of the cytopenias at this point. She is at very low risk for renal damage because of a low serum free light chain and she also has no evidence of bone disease. Accordingly even if we had a difficult time controlling her plasmacytosis, she has the possibility of perhaps enjoying some quality time if we could support her with an aggressive transfusion strategy. I told her that I would recommend that she receive both packed red cells and platelet transfusions as needed.
Other options for Ms. Malkiewicz would include clinical trials although that might be difficult for her given that she would have to relocate to the treatment center and she lives in a small, rural community. Another option might be the use of pomalidomide which hopefully will be available in the beginning of 2013.
I believe Ms. Malkiewicz and her sister, who accompanied her during this visit, had ample opportunity to ask questions and they were addressed.


Friday, November 23, 2012

Lab Values from 2nd Opinion Mayo Clinic Scottsdale - November 20 2012


My lab values from my 2nd Opinion at the Mayo Clinic, Scottsdale, Arizona on 20 Nov 2012. All of their norms are slightly different than at the University of Colorado Hospital and St. Luke’s Hospital, Twin Falls, Idaho.

My wbc (white blood count) was slightly low at 3 (norms 3.4-10.6); my hemoglobin was low at 10.5 (norms 12-15.5); and platelets were low, but up to 81 (norms 149-375). Will increase my Fragmin back to 15,000 units daily injection.

My LDH was high at 235 (norms 122-222). However, Dr. Foncesa told me that the LD values were “too broad” to make conclusions from.

My creatinine was high at 1.3 (norms 0.6-1.1). My BUN (blood urea nitrogen) was normal at 18.8 (norms 6-21). My GFR was abnormal at 41.6. But, Dr. Foncesa told me not to worry about these kidney function values.

Now the not so great news.
My M-Spike is 0.5 on 20 Nov 2012 at Mayo Clinic Scottsdale. It had been 0.3 on 17 Oct 2012 at UCH. Normal is ZERO.
My immunoglobulins are still non-existent - I think, this is to be expected after 2 autologous stem cell transplants (ASCT) - I'm Day 186 since the 2nd ASCT. This means I have no immunity to invaders.

Thursday, November 22, 2012

Scottsdale Arizona via Denver Colorado to Idaho - Thanksgiving Day - November 22 2012

Jani and I got up and departed our Scottsdale, Arizona motel at 4:25 AM. Jani wasn't CERTAIN on how to get back to the Phoenix Airport, but we had written instructions and off we went. Except for one missed turn and a loop back, we made it to to the rental car return area (about 8 minutes from the airport terminals). We had to wait for the rental car bus, but made it to Terminal 2 for our check-in at United Airlines with plenty of time to spare. THANKFULLY, I had Jani with me, because she did ALL THE THINKING and I just followed along.

We boarded our flight to Denver's DIA, but we weren't able to sit together. I listened to my i-tunes and wore my mask the whole way - about every other person in the plane was coughing and/or sneezing.

When we got to Denver, we had to walk from Gate 16 to Gate 80 for my next flight to Idaho Falls - so, I got my workout for the day. We had lunch midway - I ate at Steak Escape for the first time and loved it.

Jani waited with me at my gate for the Idaho Falls Sky West flight until Robbyn got to DIA to pick her up.
 Missing my sister already!
The weather in Idaho Falls, Idaho - 44 degrees. Ron called me about this time and told me that Kemmer was skunked this morning - oh joy~ He had given her one bath - but, I'll need to give her "the treatment" when I get home!
Wore my mask the whole way on the flight  because EVERYONE was coughing - if I don't get sick from this leg of the trip - it will be a miracle!
 Had a window seat and noted that Wyoming has very little snow!
 The mountain tops in Wyoming have snow, but none in the valleys.

 My home in the Big Lost River Valley is a 100 mile drive across a high desert plain.
Landed and hiked to Bart in Long Term Parking. Then, off to the store (fortunately, I found one open on Thanksgiving Day) and got the ingredients for skunk smell removal for Kemmer.

Driving home, there was absolutely no traffic - a lonely LONG road!
 Driving in to the Big Lost River Valley on Highway 93 - November 22 2012.
 Mackay's Mine Hill - November 22 2012.
Stopped to say hi to my father and he was fine - several friends in town had brought him plates of food and he was on his way to Marinac's for dinner. I was invited, but I was EXHAUSTED and had to go get Kemmer and treat her for skunk.

Ron had done a pretty good job on Kemmer with "Skunk Off" a prepared product, but she smelled like a public service station restroom with a sickly sweet over sized deodorizer. Regardless, Kemmer was delighted to see me. Came home and decided we would have to deal with the smell mañana! 

I also had plates of food in my refrigerator from friends, Shirley and Wayne Olsen, Gretchen Lawrence, and Ron - so, I will have a great Thanksgiving when I'm not too tired to eat.

Became one-with-my-sofa about 5 PM and slept hard until 9 PM. Got up and went to bed wishing Kemmer didn't SMELL. 

Wednesday, November 21, 2012

Movie and a Steak Lunch in Scottsdale Arizona - November 21 2012

Jani and I went to see the movie "Lincoln" before lunch today in Scottsdale, Arizona. What a terrific film!
 I felt tired this morning and look it~
After the movie we went to a nice steakhouse (we were very underdressed, but oh well) and had great steaks and baked potatoes - afterwards, I felt a lot better - I think I just needed some protein and potassium~
We returned to our hotel and started to pack for our departure tomorrow on Thanksgiving Day at 4 AM.


2nd Opinion - Mayo Clinic Scottsdale, Arizona - November 20 2012

Jani and I arrived early at the Mayo Clinic Scottsdale Arizona for my 1:40 PM appointment with Rafael Fonseca, MD, Chair, Department of Medicine, Consultant , Hematology/Oncology.

We walked around a bit and checked in on the 3rd floor. We didn't have to wait long before they took us back for vital signs, weight and height. Then, they put us in an exam room like we have never seen before - carpet and a sofa!
Rafael Fonseca came in moments later and greeted us warmly. He spent just over an hour with us and was very responsive to our questions. He had reviewed my chart from the University of Colorado Hospital and was familiar with me "on paper".
He said he was in agreement with all of the prior treatments I've had, except maybe the 2 cycles of vorinostat (Zolinza). In short, he felt that my treatments since diagnosis had been right out of the 2012 multiple myeloma care guide (if there were such a thing).

I will always have the 4:14 and 1q21 cytogenetics and it is just a matter of trying to control the quantity in my bone marrow. 

My current treatment with carfilzomib (Kyprolis) with Revlimid and Dex is appropriate for now. He thinks I should increase the carfilzomib dosage in the 2nd Cycle to 27 metered square from 20 as planned on 27 Nov 2012 at St. Luke's Hospital MSTI in Twin Falls, Idaho.

He would like to repeat a bone marrow biopsy after 2 cycles to see if it is working. He had them draw an SPEP on me today, but my blood isn't as reflective as my bone marrow which I already knew. They use conscious sedation and OnControl driver for bone marrow biopsies here (wish it wasn't 2 flights and 12 hours away)!

He is NOT concerned with my creatinine and GRF (kidney function blood tests) and does not think I have a problem in that arena. I can take Lasix as needed.

He sees no reason not to get an implanted intravenous port even with my prior atrial thrombus history.

He also thinks I should get my partially done root canal fixed as soon as possible even if my platelets are low, so I can get back on Aredia.

Another chemotherapy agent that might work if the carfilzomib is not working would be
cytoxan in pill form once a week with the intravenous carfilzomib.

It would be important to support me with blood and platelet transfusions as necessary and to not worry about that.

Clinical trials are not really for me since I would have to relocate and I am not willing to do that.

Pomalidomide may be out in February 2013 and Dr. Foncesa has had good success with it in clinical trials here at the Mayo Clinic Scottsdale.

Also melphalan in pill form could be considered.

He does not think that an allo stem cell transplant (one from a matched donor) would be helpful and would be too dangerous for me.

Overall, it was an excellent and informative meeting with Dr. Foncesa who said he was willing to follow me, but I didn't need to come back to the Mayo Clinic Scottsdale for the tests and treatments unless I wanted to - I'd always be welcome to come back.