When Normal becomes Abnormal

Hello loyal blog readers!
A sincere thank you for caring about my status and continuing to return here for my monthly postings and musings! (I actually wrote this weeks ago, but never posted it)

I know it’s been a bit longer than usual since I’ve ente…

Of Unsuccessful Celebrations

Seriously…………… !!!!
2012 Vacation (anniversary) celebration fail :/

July 2010:  2 years ago I was pitifully and painfully languishing in isolation at City of Hope Hospital battling for my life… not knowing the outcome of my high dose …

Today is National Cancer Survivor’s Day! Who knew?!

The 25th
annual National Cancer Survivors Day is Sunday, June 3, 2012.
“National Cancer Survivors Day® is an annual, treasured worldwide Celebration of Life that is held in hundreds of communities throughout the United States, Canada, and other participating countries. Participants unite in a symbolic event to show the world that life after a cancer diagnosis can be meaningful and productive…”
Well who knew? I sure didn’t! 
Every time I read something about cancer “survival” or being a cancer “survivor”… I still just can’t fully “connect” to the statement or idea.
Have I never really fully processed that I was diagnosed and treated for a terminal blood CANCER?

Have I “forgotten” all my TRAUMATIC live-saving treatments? Hardly!!!
Am I in denial?

Seriously, I should be fully “in touch” with all of this! But honestly… I feel a disconnect…
Yet-
I do know I was shocked when I was actually diagnosed on December 30, 2009
I do know I was really affected by all my initial chemo treatment medications early 2010
I do know I suffered from IV Cytoxan chemo June 2010
I do know I suffered from IV Melphalan chemo July 2010
I do know I received my own stem cells back in an Autologus Stem Cell Transplant July 5, 2010
I do know I was very seriously ill and could have died… several times… had I not had the treatments I did
I do know I lost my hair and had a complete visual make over, several times over since

And I do know I have continued on monthly maintenance Revlimid chemo to this day to continue to battle back the Myeloma cells trying to invade and make a come-back
AND I KNOW I AM VERY FORTUNATE TO STILL BE IN REMISSION!!! and approaching my 2 year SCT anniversary!
So to celebrate Cancer Survivor’s Day TODAY and my personal remission since late summer 2010 and other’s battling CANCER along with me-
I am wearing a Tshirt that says in BOLD letters: SURVIVOR

Ok… I am trying to feel this, trying to connect, trying to process I had/have cancer…

Here’s the pictorial of me celebrating Remission at various Cancer events this year:

RELAY FOR LIFE May 2012
with my dear friend and avid supporter
Kelly 
S U R V I V O R S! May 2012

Hubby Jim and me
Wow, how can we both be Cancer Survivors?
(not to mention that son of ours
who is further out of touch with this cancer thing than me!)
Next BIG Survivors event:
City of Hope’s giant BMT – SCT reunion
extravaganza with thousands of survivors!

And I mean THOUSANDS!!!
Seriously amazing!!!

Find me and Jim… left corner (I’m in red) 3rd row behind “Welcome” 

Me, my awesome Dr Kogut and fellow Myeloma survivor Jim

Me and Dr Kogut
Mr Awesome himself
Me, being me, showing off my 22 months
Post Stem Cell Transplant button

Ok, so after all I’ve been through 2009, 2010, 2011, 2012
you’d think I would connect with having cancer, right?
Well I do…
when I try to do things like I did
prior to a terminal cancer diagnosis
that’s when I connect with 
C A N C E R
as cancer stole my “perfect” health
my energy
my stamina
my get up and go
and my ability to be Cowgirl Julie
So my new hobby is
short distance
Horse Back Walking :)

HAPPY CANCER SURVIVOR’s DAY 2012

Rescue and Remission

Hello May, 2012

Remission is still my status, paired with Revlimid chemo 2 weeks on, 2 weeks off
“So far, so good”… as my wonderful Oncologist Dr Lee always says
I continue to experience all kinds of side-effects, and I am re-evaluating my “new norm…

Cancer Won

R I P our beautiful Molly

October 2002 – March 28, 2012

Stupid, useless Cancer

July 2003, just 9 months old
Shelter rescue Molly

We’re her third owner

Lucky us!

2011

Beautiful, loyal girl

cancerous tumor just beginning to show
on …

Myeloma + Treatment = Chance of Secondary Cancer–> o joy!!!

Revlimid Prescribing Information Updated To Include Secondary Cancer Warning

No CommentBy 
Published: Mar 15, 2012 3:43 pm; Updated: March 15, 2012 11:30 pm

The U.S. Food and Drug Administration has added a warning to the prescribing information for Revlimid stating that patients being treated with the drug have an increased risk of developing a second cancer.
The warning has been added in two parts of the prescribing information.
In the upfront ‘Warnings and Precautions’ section, text has been included stating that “Higher incidences of SPM [second primary malignancies] were observed in controlled trials of patients with multiple myeloma receiving Revlimid.”
Later in the document, the warning is expanded to explain that studies have shown that multiple myeloma patients treated with Revlimid (lenalidomide) as well as melphalan (Alkeran) and stem cell transplantation were more likely to develop a second cancer than those receiving comparable treatment without Revlimid.  In particular, the Revlimid-treated patients were at higher risk of developing acute myelogenous leukemia and Hodgkin’s lymphoma.
The Food and Drug Administration (FDA) recommends in the prescribing information that physicians monitor patients being treated with Revlimid for the development of second cancers and take into account both the potential benefit of the drug and the risk of second cancers when considering treatment with Revlimid.
Revlimid is marketed by the U.S. pharmaceutical company Celgene (NASDAQ: CELG).
Concerns about a potential Revlimid-secondary cancer link first emerged at the American Society of Hematology annual meeting in December 2010, when results were presented from three trials that showed higher rates of reported second cancers among myeloma patients treated long-term with Revlimid therapy compared to other patients in the same studies.
Despite extensive follow-up research and investigation, concerns about Revlimid and secondary cancer persist. They are reflected, for example, in the recent International Myeloma Working Group consensus statement on maintenance therapy, which cites the risk of secondary cancer in its discussion of maintenance therapy with Revlimid (see related Beacon news).
The recent change in the U.S prescribing information for Revlimid was preceded earlier this year by a change in the European prescribing information for the drug.  The European change reflects the results of a safety review by the European Medicines Agency, which was concluded last September (see related Beaconnews).
The warning added to the European prescribing information is more extensive than the warning added by the FDA.  In particular, the European agency added three paragraphs to the section on “other special warnings and precautions for use.”
The first two paragraphs note that, in both previously treated as well as newly diagnosed multiple myeloma patients, treatment with Revlimid has been associated with a three- to four-fold increase in the rate of second cancers versus what was observed in the trial control groups.
The third paragraph then states, “The risk of occurrence of [second cancers] must be taken into account before initiating treatment with Revlimid.  Physicians should carefully evaluate patients before and during treatment using standard cancer screening for occurrence of second primary malignancies and institute treatment as indicated.”
The U.S. Food and Drug Administration began its own safety investigation of Revlimid – and alsothalidomide (Thalomid), which is chemically similar to Revlimid – in April 2011.  An FDA representative contacted by The Beacon was unable at this time to clarify whether the recent change in Revlimid’s prescribing information reflects the conclusion of the agency’s investigation.
Neither the FDA nor European authorities have thus far made any changes to the prescribing information for Thalomid related to secondary cancers.
At the 2011 American Society of Hematology meeting this past December, Dr. Antonio Palumbo of the University of Torino in Italy summarized results of a retrospective analysis of the risk of secondary cancer associated with Revlimid and thalidomide treatment (see related Beacon news).
The results of the analysis indicate that treatment with Revlimid in and of itself may not increase the risk of secondary cancers.
Instead, there may be an interaction between treatment with melphalan and treatment with Revlimid (or thalidomide) that increases a patient’s risk of developing secondary cancers.
Dr. Palumbo also presented data showing that the risk of developing secondary cancers when treated with Revlimid is generally lower than the risk of a number of serious side effects that can occur during common myeloma treatment regimens.
For more information, see the text that was added to the U.S. and European prescribing information for Revlimid, which is included below, or the full U.S. prescribing information and the full European prescribing information.
Additionally, please see the complete compilation of Beacon articles with information on the Revlimid safety controversy.
Addition To The U.S. Prescribing Information For Revlimid
Second Primary Malignancies (SPM): Higher incidences of SPM were observed in controlled trials of patients with multiple myeloma receiving Revlimid.
Patients with multiple myeloma treated with lenalidomide [Revlimid] in studies including melphalan and stem cell transplantation had a higher incidence of second primary malignancies, particularly acute myelogenous leukemia (AML) and Hodgkin lymphoma, compared to patients in the control arms who received similar therapy but did not receive lenalidomide. Monitor patients for the development of second malignancies.  Take into account both the potential benefit of lenalidomide and the risk of second primary malignancies when considering treatment with lenalidomide.
Addition To The European Prescribing Information For Revlimid
An increase of second primary malignancies (SPM) has been observed in clinical trials in previously treated myeloma patients receiving lenalidomide [Revlimid] / dexamethasone (3.98 per 100 patient-years) compared to controls (1.38 per 100 patient-years). Non invasive SPM comprise basal cell or squamous cell skin cancers. Most of the invasive SPMs were solid tumour malignancies.
In clinical trials of newly diagnosed multiple myeloma, a 4-fold increased incidence of second primary malignancies has been observed in patients receiving Revlimid (7.0%) compared with controls (1.8%). Among invasive SPMs, cases of AML [acute myeloid leukemia], MDS [myelodysplastic syndromes] and solid tumours were observed in patients receiving Revlimid in combination with melphalan or immediately following high dose melphalan and ASCT [autologous stem cell transplant]; cases of B-cell malignancies (including Hodgkin’s lymphoma) were observed in the clinical trials where patients received Revlimid in the post ASCT setting.
The risk of occurrence of SPM must be taken into account before initiating treatment with Revlimid. Physicians should carefully evaluate patients before and during treatment using standard cancer screening for occurrence of second primary malignancies and institute treatment as indicated.

Great Myeloma article on trying to find our “new normal” 

http://www.myelomabeacon.com/resources/

http://www.myelomabeacon.com/blog-posts/

http://www.myelomabeacon.com/links/

I’m LEARNING that I TRIED TOO HARD TOO SOON TO BE TOO NORMAL…
headed to the Cardiologist tomorrow… I can’t get rid of these chest pains, breathlessness and sometimes stabbing/jabbing chest pains ….

Too Many, Too Much, Too Overwhelming

I’d like to write another “happy” post like my last one, but I am just overwhelmed by so many people in my life with medical challenges:

A dear family friend (who’s like a brother to Jim and me, and another dad to Scott and Alissa) recently suddenly, …

Remission = Back in the Saddle again!

July 4, 2010 =Receiving Myeloma killing Melphalan Chemo
at City of Hope Hospital
July 5, 2010 =
Receiving my life regenerating Stem Cells
at City of Hope Hospital

February 4, 2012 =Back in the Saddle again
for the first time since 2009!

Mom and Daug…

December + Biopsies = Cancer

Friends are advising us to stay away from Doctors around New Years and head to Hawaii, staying as far away from medical facilities as possible— and here’s why:

December 2009 = Bone Marrow Biopsy for me
December 2011 = Cystourethroscopy for my …

Diagnosis: Multiple Myeloma – 12 – 30 – 2009

December 30, 2009 my life forever changed
December 30, 2009 I was diagnosed with Multiple Myeloma CANCER

That day, that appointment, is still a blur… except for the word cancer, cancer, cancer
Multiple Myeloma Cancer invaded my body and consumed …