One of Dodo's favorite Gifts

Jodi proudly wears her beloved family tree necklace that was hand delivered by her grandson, Jared. This is a handpicked gift from Mimi and Jenner. "Thank you" Jodi will not take the necklace off, so it is safe to say she loves it.

A Picture is Worth 1000 Words!

Jodi's Recovery Journal, week 3 and into week 4

The phoenix has long been presented as a symbol of rebirth, immortality, and renewal.

It is time for another update on Jodi’s recovery. The light can be seen at the end of the tunnel is a fitting cliché to describe Jodi’s recovery at this point. She has really been fortunate at every stage of her illness and her recovery has been no different. She has continued to get better a little each day since being discharged from the hospital. Along the way her doctors and nurses have been amazed at how well she is doing.

Jodi was discharged from the hospital just over 3 weeks ago. Generally most patients find that they do not even start to feel anything like their normal selves until at least 30 – 60 days after being discharged from the hospital following an autologous stem cell transplant. Jodi has been gaining strength and feeling a little better each day. She finally started well enough to come down to the dinner table for dinner about 10 days ago which was a big step.

For the first week after coming home Jodi was so exhausted she could barely get out of bed. She spent most of the day sleeping and she had to be practically force fed to keep her from becoming malnourished. All the food just sounded awful to her and made her nauseous. She had no appetite and just felt exhausted all the time. The thought of being stuck in that state of health forever was a real fear for her. She actually was doing much better than expected for her first week. Many patients get rushed back into the hospital for a variety of complications, all of which Jodi successfully avoided.

During the second week home she really started to turn the corner and began feeling better. She could get up and walk around a little each day and started socializing which was a sure sign and a good sign that Jodi was back. J During the third week she really blossomed and began actually leaving the house occasionally on a short errand with Ed. Two days ago the whole family including Jodi met me at 5 Guys Burgers after my shift at 8:30pm. This was amazing that she had the strength and health to do this as we did not expect this level of health and energy for a few more weeks. It truly was unbelievable how well she has bounced back from the depths of cancer misery.

As we enter the fourth week Jodi has been up and about each day walking up and down the stairs. She is no longer nauseous and is getting her appetite back. It is great to see the Jodi we all know and love starting to reemerge. It has been nothing short of a miracle.

Just before entering the hospital Jodi was given a very powerful blessing where she was told that at some point her healthcare providers, nurses and doctors would actually tell her that her healing was a miracle and use the exact word “miracle”. Now that some time has passed since the blessing and hospitalization it has become clear that her progress has been a miracle. Two doctors and One nurse have told me on separate occasions that Jodi’s recovery and progress have been a miracle and I can say from a medical standpoint it has been a miracle.

Jodi's Adjustment to Home Life

Extra, Extra read all about it:

Grant, Kellen and Lennox make Dodo's day!! Thank you Stephanie and boys! 


Also, a big shout out to Staci my sister who sent a great personal write up on how to feed and what to feed a patient who has no appetite and does not want to eat. This was amazing and truly helped in getting Jodi to eat and getting her well nourished.  Thank you!

As you know Jodi has been out of the hospital for almost one week now. Tomorrow will be her "one week home" celebration. She has been doing well but it has been an adjustment for her and her body as she has gone from the hospital environment to the home environment.

Most patients with prolonged hospital stays and intensive treatments will spend the first couple of weeks or even longer just sleeping when they get out of the hospital. They often become dehydrated because they no longer have an IV and they will also have some form of body aches and pains as they have been on IV medications in the hospital around the clock and in the home environment they no longer have IV access and will take medications by mouth rather than IV formulations. Needless to say their body has to make adjustments to the home environment. 

Jodi has done well and with Ed's help and constant presence Jodi has been able to dodge many of the standard pitfalls of the post hospital "yuck". Jodi has been fatigued but has had limited nausea, minor pain and no significant misery. We have been pleased with these results and more importantly she has avoided any infections and has not fallen and broken any bones. Falls and infections are two common disasters that occur in recovering patients that can have devastating outcomes.

All of the precautions to avoid infections and falls have been put in place and Ed has been diligent in doing his job to keep Jodi safe from these complications and he remains on guard.  This first week has been a great week when compared with the normal progression a patient goes through as they transition from the hospital to home. However Jodi has still had her share of reminders that her body has been at war with cancer.

Her first night home was an emotional, wonderful as well as a difficult night for Jodi. As her body adjusted she was overwhelmed with fatigue and exhaustion. She had a tough time “getting comfortable” which made it difficult to sleep. She has very little recollection of that first night, which is a great thing the body and mind do to help the patient get through the tougher times. It just becomes a blur which turns out to be a blessing because if she could recall the tougher times with great detail she would be anxious about any possibility of experiencing that level of discomfort again.  In her case she has been able to really avoid the typical prolonged discomfort that often is experienced.

Jodi has been alert and feeling “good” this week. She has been able to get up and walk around, spend time with all of us talking and watching some TV. Ed has continued to read to her and she has been remarkably doing well. She has been plagued with exhaustion, fatigue and no appetite but much less than expected. She has put up with us keeping her fed and hydrated even though the thought of any food seems unbearable to her at this point. Each night she has been able to stay up a little later as we attempt to get her back to her pre hospital schedule. Last night was a late night as she was able to stay up until 9:00pm.  They had her pretty well out between 7:00 – 8:00 pm while in the hospital and would wake her up throughout the night and early morning for various tests and exams.

She is still not into reading her emails herself or getting on the computer as these activities tend to make her more fatigued, nauseous or uncomfortable. She also has not done much talking on the phone. However she loves the phone calls, letters, emails and good vibes and prayers from everyone. Ed will read letters  and emails to her and she loves looking at the pictures and letters from the grandchildren!

Grant, Kellen and Lennox are the superstars with there great drawings and letters (numbers), these things keep Jodi going. 

It has been a true blessing in our home to see the love and respect that Ed and Jodi have for each other and to be surrounded by the wisdom and knowledge that comes from 49 years of marriage and years of serving each other and all those around them. They truly are absolutely “in love” and really still like each other. This love and service has been a great influence and a welcomed example in our home. We are lucky to have them here and share this part of their life and have them as part of our life. 


Ivy, Mazzy, Matia and I have been rewarded to have Ed and Jodi here for family prayers and scriptures and family home evening and all of the other day to day aspects or our lives that have been blessed by having Ed’s and Jodi’s example, knowledge and influence here in our home.  I love hearing Mazzy and Ivy yell out “Dodo and Papa, it’s time for scriptures and prayers!” as we gather at Dodo and Papa’s entrance to their bedroom to say goodnight and read and have family prayer.  Priceless.

“Thank you everyone for all of your support and love!” ~ Jodi

The Details of recovery

Jodi's WBC count continued to rise throughout the week until she finally was in the normal range. The doctors kept her a couple extra days to keep an eye on her "low-grade" fever. On Saturday 07/09/11 her doctors were happy with her labs and declared her safe to go home. The Stem Cell Transplant graft successfully grafted into Jodi's body and gave life to new fresh and clean bone marrow.


Now what?

Home for now remains here in Chicago as she will require more treatments as part of the protocol of her overall treatment. If all goes as planned she will continue to be followed and treated by her doctors here for the next few months and complete all of the post transplant treatment. At that time she will most likely transition her care to doctors in Colorado where she will simply receive occasional check ups, imaging, lab work done to monitor her remission.

The next 30 days will continue to be tough for Jodi as she is extremely fatigued and just feels "blah". This is normal and she will get a little bit stronger each day, 2 steps forward, 1 step back. She will need to remain careful with the food she eats and contact with people and bacteria, viruses etc. Ed is serving as her guard and watching over her to assist and make sure she is well cared for. He constantly updates me with vital signs, symptoms and questions. He has been great. He keeps her as comfortable as possible.

She will continue to see her doctors here 2 - 3 times a week and has her first clinic appointment since before she was hospitalized tomorrow.

Her sprits are good, she has done miraculously well! She definitely feels like she has been run over at times but is so thankful for all of her blessings, family and friends.

Jodi is home! 07/09/11

Rejoice, rejoice Jodi is home where she belongs. She came home Saturday 07/09/11 at around 5:00 pm. She walked herself into the house and up to her bed.

She looks adorable and is glowing in spirit and health. We rejoice her homecoming. She has a way to go for full recovery but is well on her way.


More details to follow....

Happy 49th Anniversary and an update

First of all, Happy Anniversary to Jodi and Ed!!  49 years and they are still smiling. Unfortunately, Ed could not bring flowers to Jodi because she can’t have plants in her room given they could carry a parasite or some other pathogen. It is a good day, a very good day.

Jodi is on the mend and is days  being released from the hospital. Her WBC count is within normal ranges and she is rebounding quite well on all fronts.

Jodi would most likely already be home, however she continues to have an occasional low-grade fever most likely secondary to other issues than fever. In Jodi's case, these low-grade fevers do not appear to be related to an infection but rather they are noted after the daily injection of a neupogen (medication that stimulates growth of hematopoietic stem cells).  Sometimes patients can get a low-grade fever as a result of this medication.  However the doctors want to make sure that this low-grade fever is not, the beginnings of an infection.

If Jodi can go “fever free” for 24 – 48 hours she should be released. In the meantime Ed continues to stay at her side throughout the entire day as her support, best friend and confidant.  It is great to see them together and fighting this thing.

At this point Jodi is stir crazy and wants to get released and who can blame her. She has been “the greatest, nicest, kindest, optimistic patient on the unit” according to the charge nurse.  Every person who has worked on Jodi’s case has sought me out to tell me how wonderful she is and how loving and supportive Ed has been.

We of course already know this about Ed and Jodi but it has been great to see the impact they have had on the entire Stem Cell unit, the staff and other patients have felt the light of Christ through the Jodi and Ed’s example. Ed and Jodi know the names of the doctors,  pharmacists, nurses, nurse assistants,  janitors, and they go out of their way to speak with them and show interest in their individual lives. One of the janitors (environmental services) told me after I left Jodi’s room today that in all her years working at the hospital she has never had a patient ask her name, get to know her, and take genuine interest in her as a human. She was actually a little choked up as she told me about her interactions with Ed and Jodi.

Jodi is well and healing nicely. I will keep this blog up to date to keep everyone informed on her status.  Thank you, thank you and thank you. Everyone’s’ collective prayers, thoughts and support has been felt and a tremendous comfort to Jodi, Ed and our family. Thank you

Jodi's WBC count starts to climb!!

Happy 4th of July. Yesterday was a good day and today even better. Jodi has been tired and fatigued. Each morning the doctors wait to see if her white cell count (WBC) has risen. Finally yesterday after multiple days of 0.1 and even 0.0 for her WBC count Jodi's body responded and it appears her stem cell transplant / graft has taken!

Her WBC count was 0.5 yesterday and today she was up over 1.0 which is a fantastic sign that her new bone marrow is starting to work and make healthy WBC's! She should continue to see her WBC count continue to rise until she is in the 5.0 + range (normal).

Happy independence day!

Progress Note Friday July 1st, 2011

Jodi is finishing up week 2 in the hospital. It was a great first week, but there have been some tougher days during this 2nd week. She and Ed and our entire family are grateful for all the blessings and loving care she has received from the doctors and staff on the Stem Cell Unit. 

Monday and Tuesday of last week she received her high dose chemo as discussed and did not have too many ill effects. She had some fatigue and tiredness but no expressed increase in fatigue. She did not experience any bone pain or much nausea and no vomiting. Then on Wednesday 6/22 she had her infusion of autologous stem cells (her transplant) as discussed in the previous posting.

Her first week went well and her 2^nd week has been good; however, she is finally starting to feel some of the negative side effects which are the results of both the cancer and the medications.

Tuesday of this week, 6/28, she awoke in the morning with a “sore throat” which was actually the beginning of her mouth sores  and other related symptoms. She has had some rough days this week but has continued to respond to the treatment as expected and in a positive way -- in fact, better than expected.   The side effects are not particularly dangerous or unexpected with her treatment, but they are uncomfortable.

I will explain: There are 3 real side effects from the high-dose chemotherapy Jodi received as preparation for her transplant. The major side effects are Stomatitis, Esophagitis, Mucositis.

·      Stomatitis refers to inflammation in the mouth

·      Esophagitis refers to inflammation of esophagus.

·      Mucositis refers to all mucous linings.

These are all caused by the same thing: the high dose chemotherapy which was given to rid Jodi’s body of all remaining cancerous cells prior to introducing here stem cell transplant. The medication works by attacking rapidly dividing cells which is exactly what cancerous cells are doing. The chemo is designed to target only rapidly dividing cells, so in theory, it attacks only the cancerous cells.

This is great, right? For the most part yes! The only problem is that we have several areas in our body where health cells divide rapidly.  For example any mucous membrane has rapidly dividing cells as a normal function of these linings. Our mouth, esophagus and intestines are all lined with a membrane of rapidly dividing cells. This allows these areas to rapidly turn over cells, heal quickly and provide a great layer to exchange nutrients and absorb things our body needs as well as rid the body of waste products and keep our body’s healthy.

Normally these cells rapidly divide without any issue, and we are unaware of the cells going about their jobs keeping us alive and healthy. However when high-dose chemotherapy is introduced, it targets all rapidly dividing cells including these normal mucosal cells. Many patients will have extreme side effects that can actually indirectly cause further complications making for a miserable patient and poor outcomes.

Fortunately Jodi has not had these extreme side effects; however, she has had some rough days including what was expected as discussed above. She has had painful mouth sores,  diarrhea, and general discomfort. She also has continued weakness and fatigue (which she has had since the time of diagnosis at varying degrees). It has been worse this week, and with the added pleasures of mouth sores and other symptoms, it has been a long week.

If you were to call Jodi or Ed or get the pleasure visit her, you would never known.  She is upbeat and always smiling. She has been a true champion throughout these tougher days.  Of course all the staff comment and express how much they enjoy and love Jodi. She has won all of them over and many have relayed to me that she is their favorite patient, but any of you who know Jodi would have predicted this. This is the Jodi we all know and love.

As far as her response to the treatments, everything is on point for a good outcome. She has responded well in everyway. Her old bone marrow is now gone and her transplanted stem cells are just now starting to generate new healthy bone marrow, so she is on her way to a full new and healthy bone marrow. Currently the doctors are waiting for the white blood cells WBC’s to flourish and go up in number. This can take some time but the labs are trending in the right direction.

Last, Ed and Jodi are grateful for all the prayers, kind thoughts, phone calls, emails, letters, love and support from those of you who love them most. Both have told me individually that they really do feel the support and love. Thank you and keep the good vibes flowing. It is much appreciated.

Jodi's life in the hospital

Jodi is on Hospital Day #3 today but Day 0 for her stem cell transplant. Let me explain:

A quick note about what kind of patient Jodi has been:

She has received excellent attention and care. Many of the staff on the stem cell unit have sent me emails, voicemails, calls etc and they all share the theme that she is their favorite patient and so pleasant and funny and an "amazing person". I knew that this would be the case and actually I am proud that she is at my place of work not only because it is a great hospital but also because I knew she would be a pleasure to treat as a patient and this bodes well for me in multiple ways. I will have less resistance when admitting to their unit from the ER and already many of the nurses and doctors who have interacted with her have already made my work easier. They genuinely like her and Ed and ask a ton of questions about both of them. It is beyond the level of just feeling sorry for me, which without a doubt has some effect but their level of interest and concern is far beyond the "I feel sorry for you" point. 

Thanks mom and dad for making me proud. Is so nice to have a pleasant and wonderful patient when you have a stressful shift and 80% of the patients are not that way. 

What is Jodi going through in the hospital and what is her treatment? 

Melphalan:

Monday and Tuesday she received a chemotherapy medication as preparation for her transplant. She had not received this medication in the past and this medication has a side effect list that is a mile long like many of the chemotherapy medications she has already been taking. The medication  is called Melphalan.

Melphalan is used to treat multiple myeloma, which as we have already discussed, is a cancer in the bone marrow .

Melphalan is an alkylating agent. Basically it works by interfering with the growth of cancer cells, which are eventually destroyed. The medication seeks out rapidly dividing cells (cancerous cells). The cancerous cells have lost their inhibition and keep dividing and growing out of control so this medication recognizes these out of control cells and kills them. Melphalan is used as part of the Stem cell transplant process to blast the remaining cancerous cells before the new healthy cells are transplanted.  The dosing and length of treatment varies depending on many things. Jodi only required 2 days of this medication on Monday and Tuesday which is a very short cycle as she has continued to respond very well.

Wednesday 6/23 Jodi Started the Stem Cell Transplant infusion

Stem cell transplantation. This treatment involves using high-dose chemotherapy —high doses of melphalan — along with transfusion of previously collected immature blood cells (stem cells) to replace diseased or damaged marrow. The stem cells in Jodi’s case came from her own body and were harvested from her bones a couple of weeks ago.

A stem cell transplant is the infusion of healthy stem cells into your body. A stem cell transplant can help your body make enough healthy white blood cells, red blood cells or platelets, and reduce your risk of life-threatening infections, anemia and bleeding.

Although the procedure to replenish your body's supply of healthy blood-forming cells is generally called a stem cell transplant, it's also known as a bone marrow Stem cell transplants can use cells from your own body (autologous stem cell transplant), or they can use stem cells from donors (allogenic stem cell transplant). In Jodi’s case she has bee fortunate enough to use her own cells which means no need for anti-rejection medications that are notorious for causing complications and worse out comes.

Next:

Stay tuned for further updates. Jodi will be monitored and evaluated to see how her body handles the new stem cells and integrates them into her system. Her weakest day or most immuno-compromised day will be this Saturday or Sunday as all of her bone marrow will have been shut down and the new stem cells will still be developing into new healthy bone marrow . In addition some of the side effects of the infusion and the high dose chemotherapy may start to kick in.

Jodi has done better than anyone could have predicted both with her minimal side effects thus far and her body’s response to the therapy. Everyone on the team has been very pleased and surprised with the results. I have been able to look at all the imaging, laboratory and clinical data and can confirm that so far the results have been miraculous.

Jodi checked into "the bubble" (stem cell unit) at the hospital Today 06/20

Jodi successfully entered the hospital to start the autologous stem cell transplant (using one’s own stem cells to transplant one’s own bone marrow)

Thank You:

Jodi has expressed a great amount of gratitude with regards to all of the outpouring of love and support by her friends and family. Thank you, Thank you and Thank you for all of your support, emails, phone calls, good vibes, payers and thoughts! It has been felt and helped. I assured Ed and Jodi that I would express this on the blog but as you know, there are no words that can express the gratitude Ed and Jodi have for all you. So thank you!!

Updates:

Before I describe the process and what she will be going through over the next couple of weeks I should probably update everyone on how she has been doing / responding thus far. The bone marrow transplant process deserves a post all on its own. 

First things first, the update:

Jodi has had nothing short of a miracle thus far in her treatment. Her body's response to the medications has been beyond what anyone expected. Her cancerous cell have nearly halted in their progress and the correlating cancer marker cells have declined 10 fold.

Also the negative side effects have been way less than expected. The medications (chemotherapy) thus far have been Velcade (Bortezomib),  Revlimid (Lenalidomide), and Dexamethasone and all of these medications have a long, long list of side effects, many of which are very commonly seen in most  patients.

Now we are known for hyperbole at times but it is no exaggeration that thus far the only side effects that Jodi has experienced from her medications have been fatigue, weakness, and mild occasional delirium (short term memory loss and or confusion, that is temporary and reversible). Jodi feels that she has had hair loss but she definitely has not lost her hair. She has experienced some hair thinning but still has a full head of hair and no large clumps of hair falling out like often seen in patient’s on these medications.

She has had minimal pain and has continued to remain considerably active definitely tired.

I have seen patients on these same medications end up completely bed ridden and moaning in pain and plagued with complications that are quite serious. She has been blessed to avoid these issues.

Here bad numbers have improved and good numbers have gotten better as far as her lab work is concerned. Her kidney function is normal, her calcium levels are normal, her hemoglobin is normal. She is on a trajectory at this rate for a fast induction into remission and a positive outcome.

She successfully completed her pre- autologous stem cell transplant (using one’s own stem cells to transplant one’s own bone marrow) chemotherapy cycles and has entered the next phase of her treatment. This phase includes hospital admission to the stem cell bone marrow transplant unit where she will have her own healthy bone marrow transplanted back into her bones.

What is going on now and what is the next phase: 

I will add another post dedicated to the transplant process that Jodi started today. Stay tuned for more…….. 

Jodi's Medications Chemotherapy: Velcade, Revlimid, Dexamethasone

Velcade (Bortezomib)


Two open-label, phase III trials established the efficacy of bortezomib  (with or without dexamethasone) administered in a 21-day cycle.

Jodi is on the 21 day cycle 
Laboratory studies and clinical trials are investigating whether it might be possible to further increase the anticancer potency of bortezomib by combining it with novel types of other pharmacologic agents. For example, In laboratory studies, it was found that bortezomib killed multiple myeloma cells more efficiently

Revlimid (Lenalidomide)
Lenalidomide has been used to successfully treat both inflammatory disorders and cancers in the past 10 years. There are multiple mechanisms of action,  lenalidomide has three main activities: direct anti-tumor effect, inhibition of the microenvironment support for tumor cells, and immunomodulatory role. Lenalidomide induces tumor cell apoptosis (cell suicide) directly and indirectly by inhibition of bone marrow stromal cell support, by anti-angiogenic and anti-osteoclastogenic effects, and by immunomodulatory activity. Lenalidomide has a broad range of activities that can be exploited to treat many hematologic and solid cancers.

Treatment of multiple myeloma

Multiple myeloma is a rare cancer of the blood, characterized by accumulation of a plasma cell clone in the bone marrow. Lenalidomide is one of the novel drug agents used to treat multiple myeloma. It is a small molecular analog of thalidomide that was originally found based on its ability to effectively inhibit tumor necrosis factor production. Lenalidomide is 50,000 times more potent than thalidomide in inhibiting tumor necrosis factor-alpha, and has less severe adverse drug reactions. A phase III clinical study,  found that lenalidomide plus dexamethasone in patients with relapsed or refractory multiple myeloma was superior to the old treatment of multiple myeloma consisting of high-dose dexamethasone alone.



Dexamethasone
Cancer patients undergoing chemotherapy are given Dexamethasone to counteract certain side-effects of their antitumor treatment.
Dexamethasone is also used as a direct chemotherapeutic agent in certain hematological malignancies, especially in the treatment of multiple myeloma, in which dexamethasone is given alone or in combination with other chemotherapeutic drugs, including most commonly with thalidomide (thal-dex), lenalidomide, bortezomib (Velcade; Vel-dex),[3] or a combination of Adriamycin (doxorubicin) and vincristine (VAD).

Jodi is on the most current cutting edge aggressive treatment regimen for Multiple Myeloma:

 Velcade (Bortezomib),  Revlimid (Lenalidomide), and Dexamethasone


This is her chemotherapy. In addition as mentioned in other posts she is also in a study involving a medication called Zoledronate for the treatment of bone breakdown as a result of her Multuple Myeloma. This drug does not treat the caner but treats the weakened bones.

Quick Update 1st Cycle of Chemo done, On to the 2nd cycle

Jodi has officially finished her first cycle of chemotherapy. She had one week off of all medications and did well. On Monday of this week she started her second cycle of chemo and because her kidney function is stable and doing well, the doctors were able to increase the amount of chemotherapy she's receiving for her second cycle. This is a good sign because often patients with multiple myeloma have kidney failure from the cancer itself. Jodi's chemotherapy includes three medications and for their first cycle of chemotherapy she only received part of one of the medications given the side effect of that medication is kidney toxicity. Given the fact that her kidneys have remained strong and not declining in function the doctors were excited. They were able to increase the medication to its full dose for her second cycle of chemotherapy. The medications are Revelimid, Valcade, Dexamethasone.

The side effects of this kind of chemotherapy typically include severe body aches, general fatigue and malaise. Basically the patient aches and is extraordinarily tired, leaving them too tired to get out of bed.  Some patients will also experience hair loss and eventually lose all of their hair. So far despite Jodi's continual lament and questioning about whether her hair is falling out, she appears to have a full head of hair.  Jodi has been a trooper and although she's been extremely tired this week as she starts her second cycle of chemotherapy,  she has been able to get up and get around and even go out a couple of times. She is however more tired in worn out. Another side effect of this cancer, not so much the chemotherapy, is pain. Jodi has been in pain however the pain has been considerably less significant than expected.  Fortunately she has good medications and has been blessed with better health and strength than expected.

Jodi will will have a total of three or possibly four of these chemotherapy cycles, and then get ready for her bone marrow transplant. This is quick and brief update on Jodi's life as we know it today. We love having Jodi in the house she's an awesome grandmother and wonderful mother / mother in-law.  We also thoroughly enjoy having Ed in the house, he is a great handyman and is busy taking care of Jodi, helping out the grandkids and all sorts of chores around the house. I'm wondering at what point I should break the news to Ed and Jodi that she actually doesn't have cancer and that this is all just a ruse to get extra help in our house.

Keep checking back in with this blog as I will continue to update it as Jodi continues her cycles of chemotherapy and gets ready for the bone marrow transplant.  I will include a post that explains the autologous bone marrow transplant in great detail but for the meantime keep her in your prayers and know that she is in good spirits and doing well. Also, Jodi loves hearing from all of you and the phone calls and letter / emails have cheered lifted her spirits.

Jodi's Prognosis?

Often doctors are asked; "How long do I have?" "What is my prognosis?" Although this is a difficult question and most doctors avoid giving a direct answer, hopefully I can shed some light on this question regarding Jodi.

Multiple Myeloma for many years has been considered a chronic yet terminal illness. Most of what you read on the internet is outdated and not up to speed with the current rapidly progressing and changing treatment strategies of MM. Many oncologists will discuss amongst other doctors and state that in fact MM can be cured and has been cured for many patients. However there is not enough data with these newer aggressive treatments to officially call this cancer a "curable" cancer.

Many people live 10+, even 15 years or longer and ultimately die of other causes. Geraldine Ferraro recently passed away after living with MM for 12 years. I have seen many patients with 10+ years and these patients were treated with inferior and older medications. So the future looks bright and we suspect to have Jodi at Ivy's wedding and Ivy will not be allowed to get married prior to 23 and she is only 12 years old now.

Jodi has been blessed to be included in a couple of the most advanced cutting edge treatment strategies for MM and will certainly benefit from these treatments.

Did I skillfully avoid answering the question?

The Treatment Plan Part: Bisphosphonates & Pathologic Fractures

There are many different treatments out there for Multiple Myeloma (MM) and there are constantly new medications being studied. There also several studies to test new drugs or new drug combinations occurring at any given time. There are multiple factors to why 1 combination may be good for a patient and not good for another patient even though they have the same cancer. It is a complicated and daunting task for newly diagnosed patients to figure out what options are even available. To further complicate issues, the experts disagree and often have varying opinions about the different treatments. There is also clinical data that is published regarding treatments and outcomes but these studies take time and are usually 5 years old by the time they get published. I guess what I am trying to convey is that treating any cancer can be very confusing and difficult. The treatment and strategies are constantly changing and improving.

One of the big problems / side effects of MM is pathological fractures. The overgrowth of plasma cells in the bone marrow causes enzymes to extract calcium from bones which causes the bone to become weaker and ultimately fracture from forces that would not normally cause a bone to break, hence the term "pathologic".  Often MM is diagnosed when a patient comes to the doctor with a broken rib from "coughing" or "playing with the grandchildren". This makes the doctor think about MM and run appropriate tests to look for the cancer. Even in recent years individuals with MM would have a pathological fracture of the spine or hip which would lead to their early death. It was and is not uncommon for a patient with MM die from a pathologic fracture related deterioration of health.

Part 1 of Jodi's Treatment:
Jodi has been fortunate to be included in a study for a treatment for bone regrowth. bisphosphonates are a class of drugs that have been around for a while and are used to treat osteoporosis. Modern versions of these drugs have been highly adapted and a recent study that uses high dose bisphosphonates to treat people with boney metastasis from other cancers and people with multiple myeloma has taken treatment of these pathologic fractures and prevention of further fractures to a new level.  The study is difficult to get included in as a patient, and has been extraordinarily well received by those in the study.  Eventually this treatment will be the standard of care for these cancer associated bone problems.

Jodi has started this treatment and has already seen improvement in her bone pain and strength. At her time of diagnoses she had multiple small pathologic lesions and some fractures. Fortunately it was early on the the disease state that she had not developed any spine fractures or hip fractures or other more serious fracture. Due to acceptance in this study her bones have already started to improve and strengthen which eliminates 1 aspect of concern regarding her diagnosis.

This image is not an image of Jodi's spine fortunately. This is a severe pathologic fracture from an unknown patient with MM, ultimately leading to neurologic dysfunction.

What is Multiple Myeloma?

Multiple myeloma (MM) is characterized by the neoplastic proliferation of a single clone of plasma cells producing a monoclonal immunoglobulin. This clone of plasma cells proliferates in the bone marrow and often results in extensive skeletal destruction with osteolytic lesions, osteopenia, and/or pathologic fractures.


That is the medical jargon. Now for a simpler explanation: Bone Marrow contains all kinds of cells that are important for generating blood and all of its ingredients. One of those ingredients are called plasma cells. These plasma cells should make up less than 10% of the total ingredients. People who have multiple myeloma have an overgrowth of plasma cells. Too much of a good thing causes problems and can cause calcium imbalances which can lead to bone destruction and fractures that occur when they should not occur (pathologic fractures). 


In Jodi's case she broke her ribs "from coughing" which was worrisome and ultimately helped lead to her diagnosis. One should not fracture ribs from coughing. 


If MM is left unchecked the overgrowth of plasma cells will continue to wreak havoc on the blood which hurts the immune system as well. Ultimately individuals left untreated will have multiple fractures including debilitating spinal fractures and become immunocompromised which leads to infections.


Staging Multiple Myeloma
Fortunately, much progress has been made on the treatment of MM. In the 1970's there was a staging system created where patients were staged I, II or III. Stage I having the best prognosis and Stage III having the worst prognosis. For the most part this staging system has been abandoned for MM due to a better understanding of the disease itself and the realization that the staging system was not that accurate and looked at factors that ultimately do not relate to prognosis. 


Jodi's case is not considered aggressive nor is it considered mild but rather somewhere in between closer to moderate to mild. Regardless her treatment will be the same. 


In modern medicine / more cutting edge medicine MM now is not staged and all newly diagnosed patients are often put on aggressive treatments regardless of the degree of the disease. In Jodi's case she has been fortunate enough to be involved in a center that specializes in the treatment of MM and takes an aggressive treatment approach to quickly stomp out the disease and knock it into remission. 


The treatment includes 3 medications that she will take in 3 cycles, 21 days on and 7 days off (3 months = 3 cycles) and then she will receive an autologous bone-marrow transplant, which is a bone-marrow transplant made from her own health stem cells. She will not require suppressive medication to avoid rejection since it will be her own  healthy bone-marrow.


More on her specific treatment later.  


This is a quick brief explanation and there will be more details to follow