Asymptomatic Relapse

Wow it has been a real long time since my last post. Things have been going well, just on cruise control until the last three months.  As 2016 started, my Lambda Light chains have started to slowly rise. Each blood test after March showed a slight rise.  On June 1st I met with my Myeloma specialist, Dr SS.  Dr SS is not overly concerned in the rise in Lambda Light chains, though she wants me to add a drug called dexamethasone, (Dex). She feels the addition of Dex will beat down the light chains back to a normal range.  Dex is a steroid and can cause mood swings, weight gain and a spike in blood sugar.  Last time I was on Dex I could literally go for 24-48 hours with little to no sleep, then I would crash on day 3 or 4.  Hoping for better results this time since I will only be on 12mg instead of 40mg.

So what does asymptomatic mean?  It means there are no other symptoms other than the rise in the Lambda Light Chains.  The MRIs from March all came back negative and all other blood numbers are in check.  This is just a bump in the road in life with Myeloma, first one in five years.  

So, what the heck is a lambda light chain?  Below is a picture of an immunoglobulin.  

An immunoglobulin is made up of a set of heavy and light chains.  In my case the light chains break away or do no attach to the heavy chain.  When this occurs the  light chains are released into the blood stream. The kidneys then must filter out the light chains.  Having too many light chains in the blood eventually will impact the kidneys.

That's all for now, I hope everyone is doing well.

Tim

MMRF 5k walk / run

Well it has been quite a while since my last post.  I have been running on cruise control for the last several months.  My monthly bloods tests and quarterly doctor visits have been going well.  At my last doctor visit my doctor said I was in great shape.  I changed from taking my maintenance chemo from mornings to evenings which has had a good improvement on my overall energy levels.  I had an issue with my potassium levels, which seemed to have been impacted by my 2 mile walk from the train station in Chcicao to NW hospital to have my blood draw (self analysis at this time and not confirmed by my doctors). No complaints at this time, I hope I can continue on cruise control for a long time into the future.

It is September, and that means it is time for the MMRF 5k walk / run.  My family has participated in the MMRF 5k Chicago for the last two years, this will be our third year.  The past two years we have walked the 5k, this year I will be running the 5k with the hopes of completing the 5k in under 30 minutes.  Thanks for everyone's support to the MMRF this year and the past years.  There is still time to join Team Brinker.  Is there a better way to spend a Sunday other than in the city of Chicago and walking or running along the lake shore.  I know it is football season, if you walk fast enough you can be home or in a bar before the first kickoff.  The 5k kicks off at Lincoln Park Zoo on the beautiful north side of Chicago.

Join or Support Team Brinker

Here is a great video the MMRF put together for the race for research, it is worth watching.

MMRF Video

In hopes to raise additional money for the MMRF, the Brinker family designed and made leather wristbands.  I purchased all the supplies and the family donated time to create the wristbands.  I am selling the wristbands for $10 and donating all the money to the MMRF.  The wristbands are for sale on Etsy. We have 3 designs.  All wristbands have insperational words, one style has studs, another style has the sun and moon (see the description on Etsy regarding the sun and moon) and the third design has the sun, moon and maroon cancer ribbons.  You can save on shipping costs if you are local or will be coming into town I will be sure to get one to you.

Buy a Wristband

The ALS ice bucket challenge was a great idea for a great cause.  ALS is a terrible incurable deabilitating disease and I am happy they raised so much funding and awareness.  We can't forget many other incurable diseases that all need the same attention and money as ALS.  Here is my challenge, if you did or did not do the ice bucket challenge,  my challenge is that you donate $10 to any cause that is close to your heart.  No ice bucket, no shivers just a simple writing of a check to any charity of your choice.

Don't forget, September is also blood cancer awareness.  

New Year New Doctor

Well it has been quite a while since my last post.  Been real busy with work the last six months, busier than I wanted to be.

I met with my doctor at Rush University at the end of December and he let me know that he was leaving Rush and moving to the east coast.  So, I needed to find a new Myeloma specialist in the Chicago area and I decided to go to Northwestern.  I met with the new doctor on Monday and she was wonderful. I go to most of my appointments with a list of questions, this doctor was so amazing she must have answered half of my questions before I even asked any.  The new doctor has some different ideas, which are all good.

So, coming up in April I will spend the day at Northwestern to have several tests done.

MRI of the skull, spine...MRIs are much more sensitive than a skeletal survey.  The MRI can find any hiding myeloma in the bone marrow before the bone is decayed enough to be seen on an X-ray.  The new doctor will use the MRI to to monitor the disease instead of skeletal surveys.  This is very good.  

Echo Cardiogram, the reason for this test is to check the heart for any amyloidosis. Amyloidosis is where proteins could be deposited on the heart or any other organs.  This would make the heart walls thicker.  The doctor wants to monitor this and have a base line.

Bone Density Test

A couple other interesting facts from the visit.

- Acyclovir is a antibiotic used to treat shingles.  I was on this antibiotic for a year after my stem cell transplant.  The new doctor wants me to stay on Acyclovir forever.  She feels the risk of getting shingles is too high and the permanent nerve damage that shingles can cause would have detrimental effects on my quality of life.

- Revlimid - My doctor at Rush thought I would be on Revlimid for 3 years, the new doctor feels it will be 4-5 years.  There is a slight risk of secondary malignancies with Revlimid, though the benefit of Revlimid outweigh the risk.  The new doctor stated she does not start Revlimid until 6 months after a SCT to reduce the risk of secondary malignancies, most doctors start Revlimid maintenance 3 months after a SCT.  She was happy to see I started Revlimid maintenance 5 months after my SCT.

- Blood Tests / Lab Work - I used to have my blood tests done every 6 weeks rotating between the local hospital and Rush.  Now my blood tests will be every 4-6 weeks at Northwestern.  This is being done to eliminate any variations between labs.

It was a good visit at Northwestern and I feel extremely comfortable with leaving my care in the new doctors hands.

 

Happy Birthday

Today is my new birthday.  Two years ago I had my stem cells returned to my body.  The day the stem cells are returned to the body is represented as the transplant patients birthday.  The reason for a new birthday is the high dose chemo completely wipes out the bone marrow, and the returned stem cells are a recovery of the bone marrow.  Without the return of the stem cells one would longer be here on earth.

The bone marrow is responsible for producing:

• Red blood cells, which are responsible for carrying oxygen to organs on the body
• White blood cells, which are responsible for fighting infections
• Platelets, which are responsible for clotting the blood then a cut or internal bleeding occurs

Dream big and never give up!

June 2013

Wow, it has been a long time since my last post. That is a good thing, everything is stable. I last saw the doctor on June 14th for my routine blood workup and basically my blood work has remained unchanged for the last six months. I continue to take a 10mg maintenance dose of a chemo drug called Revlimid, I rarely notice any side affects from this drug. I have also increased my herbal supplement of Curcumin to 2 grams a day.

I continue to rebuild my stamina and strength. My fathers day gift was a new bicycle, which we have put to good use.

This weekend I did a 10 mile bike ride on Saturday and Sunday. Jane and I continue to walk 2 miles a day, when the weather cooperates. We are planning on running the MMRF 5k this September in Chicago. We are getting back to our active lifestyle. Before my diagnoses you would be lucky to find us at home during the evening of any night. We were always out doing something.

Here are a couple things I would like to share. This is Myeloma Awareness week (I think in the UK), here is a short video Myeloma UK put together that really helps someone understand Multiple Myeloma.
A Short Film About Myeloma

Here is an article from Cure magazine, rather lengthly but a good article.
Treating Multiple Myeloma From Every Angle

December 2012

Hope everyone had a Happy Thanksgiving and your are having a blessed time preparing the Christmas.

I was back at the doctors office Friday for my one year follow up tests for my stem cell transplant that was done July 2011. I had a few blood tests, a full skeletal survey and a 24 hour urine test. We only have a few of the blood tests results back and those numbers are looking good. I will get the rest of the test results sometime next week. My doctor is not planning on a bone marrow biopsy unless any of the tests come back with poor results.

The doctor actually said he has nothing to say, everything was looking very good so far. I had a list of questions (as always) so we had plenty to talk about. One bit of good news is Rush University is opening an office in Lisle, which will be much closer than going into Chicago. My doctor will be seeing patients on Fridays in Lisle, which will be perfect for me. The facility in Lisle will be able to do all the needed tests also.

I have decided to start taking an herbal supplement by the name of curcumin, I have read about this supplement as having an anti-myeloma affect along with boosting memory and mood. I feel at times I suffer from Chemo Brain, though not sure my doctor believes in chemo brain. His take on it was some people believe such a thing exists and others do not. He stated people have had MRIs of there brain and no changes have been found. He attributes memory issues could be related to the stress from the overal diagnosis, transplant and job related. Either way I want to start taking Curcumin, a lot of people in the Myeloma community believe strongly in the supplement. I wanted to start with 2 grams a day, but my doctor stated he did not want me to take more than 1g a day, at least until my next blood test. Some people with myeloma take over 8g a day.

I mentioned job stress above, there is an added job stress above and beyond normal working. Let me just say, if you are ever diagnosed with a terrible disease (God forbid), don't tell your employer anything besides the fact you are ill or you need surgery... By law you don't have to tell them anything and by law they cannot ask. Some free advice, my Chirstmas gift to everyone.

Merry Christmas and wishes for happiness and health for everyone in 2013.

September 2012 - Update

Last Friday, September 7th I was back for my check up a Rush University. All my numbers are still stable, actually the doctor was surprised how close my blood test results were to my numbers from the last visit. The doctor remarked that even healthy people don't have numbers numbers so close between blood tests. The doctor is pleased with the progress and is extending my blood tests from every 4 week to every 6 weeks and visits to see him from every two months to every three months. All in all it was a good visit.

I am down to just one vaccination left, then I will be done being the nurses human pin cushion. As I received the vaccines, the more vaccines the more reactions. By the last round of vaccines my arm was turning red, a little swollen and itchy. I asked the doctor about this and he stated it means my immune system is working. I guess that is a good thing.

The family is doing the 5k walk/run this year for the Multiple Myeloma Research Foundation (MMRF). This walk is intended to raise money and awareness for Multiple Myeloma. The doctor I saw at the University of Chicago is one of the honorary chairs for the 5k. Use the following link to get more information on the walk/run:MMRF Race For Research - Team Brinker

August 2012 - Update

Well a year has past since my Stem Cell Transplant and things are sailing along.  July 21st was the one year anniversary and I spent that day (along with several other days) on the island of Grand Cayman with my wife, daughters and parents.  What a difference a year makes.  One thing my diagnosis has taught me is it is time to live and experience life to the fullest.  I would have never dreamed of leaving the country, flying over large bodies of water or experiencing this wonderful adventure before my diagnosis.  This was one of the best times of my life.

With this adventure I did catch a cold, I believe I might have caught the cold from someone on the plane, but it was no big deal.

Going for my monthly blood test tomorrow and back to see my Myeloma doctor in September.  I will start my last round of vaccines next Monday.  Not much else to report, which is good.  All my counts have been holding steady.

I hope everyone is having a great summer!

June 2012 - Update

Everything has been sailing along. I started my second round of vaccinations last Monday. Two shots in the left arm and one shot in the right arm. The right arm received the dTAP (tetanus) shot, this time there was swelling, bruising and a rash. This all seems to have gotten better over the week. The three shots also zapped some energy this week, but that has gotten better also. Back to the doctor a week from Monday for two more shots.

All my blood counts have been holding strong, at my last doctors visit my doctor stated my hemoglobin is higher than his.

Time to reward the family with a grand vacation this year, everyone worked so hard last year. No Smokey Mountains this year for the Brinkers, we are going big. One thing last year taught us, it is time to live life to the fullest. The Brinker's are flying this year, and leaving the country for the beautiful island of Grand Cayman. First time flying for my daughters (16 and 11). Time to try all those things we have never done before.

Speaking of living we are also taking the girls to their first concert this year.

Hope everyone is having a great start to the summer.

April 2012 Update

I have been putting my immune system to the test the last couple weeks. A couple weeks ago I spent the weekend traveling to and from St. Louis, eating out at restaurants, staying in hotels...and all went well. This was our first big adventure since the stem cell transplant and it was a great time. The last week both my daughters were sick with sinus infections and ear infections, and I have stayed well so far (knocking on wood). My youngest just finished her antibodiocs and my oldest has three days to go. I guess constant use of hand gel is working. All in all things have been going good. I had my monthly blood test in April and all the numbers are good. Back for another round of blood tests and to see the doctor in the middle of May.

March 2012 - Update

It has been a while since my last post. Everything is getting back to normal. A couple weeks ago I spent two days out of town for work. First time in a hotel since the transplant. I have slowly started eating out at restaurants, even though the doctors have said it would be fine for months, we approach everything with a new level of caution.

Last Monday I started my vaccinations at my primary doctors office. First time the nurse there has ever given such vaccinations to an adult. Everyone knows about the tetanus shot right, you get one every 10 years. I will get 3 over the next 4 months. For the next four months I recieve 3 vaccines, then two weeks later two more. Then I wait 6 weeks and do it all over again. At this point a shot in the arm or stick in the vein has no impact on me, pretty used to it by now. After the four months of vaccinations then blood tests are done to see if the vaccinations worked.

I was back at the clinic in the middle of March for a blood test and check up and all blood counts are looking good. I will have another blood test mid April and then back to the clinic mid May for another blood test and checkup. This cycle will go on indefinitely.

Hope everyone is enjoying the early spring weather, it has been amazing in Chicago.

January 2012 - 6 Months Post Transplant

Well it has been a while since I have posted anything, with the holidays and working fulltime I have been busy.

All in all everything has been going well. We continue to walk 2 miles a day despite the cold and snow. Went back to Rush for my 6 month visit and everything continues to look good. My plan now is to have a series of blood tests monthly, and visits back to Rush every other month.

There were a series of issues with my local hematologist / oncologist, so I have eliminated him from my care and soley go to Rush.

Happy New Year to Everone.

November 2011 - Day +117

Well it has been a while since my last post, which means nothing new is going on, which is a good thing.

Met with my Primary Doctor last week, I had not seen him since last March. He was genuinely glad to see me, he even gave me a hug and we had a nice long chat. It was like a long lost friend.

Met with my local oncologist / hemotoligist today to figure the next steps. He was also glad to see me along with the nurse who used to give my injections, today she gave me a flu shot and a bug hug.

The human aspect of medicine is so important, it is so wonderful to have such welcoming arms and happiness at a place where our world was flipped upside down

The plan with the local oncoligist is:
1. Start maintenance on a drug by the name of Revlimid, I was on this drug during my initial therapy but at a much higher dose. This is one of those drugs that without insurance one could not afford to take. Yearly cost without insurance is $80,000 - $100,000.

2. I will have monthly blood tests and visits for the unforeseen future.

3. I will return to Rush every 6 months.

I think that is it, we are catiously getting back to normal. We hosted an Andersen game night last Saturday, the games nights had been suspended since I was in the hospital. It was a lot of fun and provides the medicine of laughter that is always welcome and needed.

Looking forward to getting out to my nephew Brandon's birthday party and Jane's brothers for Thanksgiving, though we do proceed with caution.

Everyone have a Happy Thanksgiving.

October 2011 - Day +101

Well I hit a milestone, day 100. This means less frequent doctor visits and I am being returned to my local doctor. My next visit to Rush is scheduled the first week in January 2012, at that time I will start my re-immunizations.

Still no yard work, lawn mowing...until I am fully immunized, which won't be until July of 2012. This also includes no swimming in pools, lakes or oceans. So our vacation extravaganza will have to wait.

I will be seeing my local doctor monthly and have monthly blood tests to monitor my condition. If anything looks out of line I will be returning back to Rush.

I will also be starting maintenance, which will be done by using a drug by the name of Revlimid. I will take this drug for two years in hopes that it keeps everything in check. I took this drug at a higher dose along with two other drugs during my induction cycle.

Yesterday not only being day one hundred we also picked up dinner from a restaurant and brought it home. First time we have eaten something out since the transplant, though the doctors have stated we could have done this sooner we are extra precarious. Though my eating out will probably limited, my last blood test revealed my triglycerides were high, slightly surprised by this since I eat fairly healthy and walk 2 miles a day. So it is time to turn it up a notch, going to try and start jogging again. I few years back I used to jog daily, at that time my triglycerides were 66.

My hair is really starting to grow in. I have grown a beard; though not ZZ Top long; and the hair on my head gets thicker everday. My sister stopped by yesterday and her first comment was look at all you hair.

Jane has been promoted from bartender to warden. I joke with her about this, I will state I am going to do something and her reply will be you can't do that. I know she just has my best interest in mind.

Thanks for all the well wishes and prayers.

Have a Happy Halloween.

October 2011 - Day +92

Well first week back at work full-time. The week went well and I am not too tired.

Back downtown Thursday for my last follow up before being released to my local doctor. Some final blood tests will done, including thyroid, cholesterol...

Trying to get back to life as we once new it.

October 2011 - Day +84

Met with the doctor today and went over all test results from the last couple weeks, and it has been confirmed that I am in complete remission.

After my next visit to Rush in two weeks I will be returned to the care of my local doctor. I will have blood tests monthly to monitor my condition and will return to Rush yearly for check ups.

I have been cleared to return to work full-time.

It is time to get everything back to normal.

October 2011 - Day +74

Well I couldn't wait 2 weeks to get the results of the missing test, it was driving me crazy. So I sent an e-mail to the doctor this morning and received a call back around 10:30 this morning. The results of the missing test were negative, which means complete remission and no second stem cell transplant. That is a load off our minds for now!

Now we wait for next Thursday (10/13) to see the next steps...

Had a good weekend and played tennis again yesterday and almost beat Alli. Played 12 games, which we both won six games a piece and then Alli won the tie breaker.

September 2011 - Day +71

Well back to the clinic yesterday to get the test results from last week or at least most of the test results. The doctor went over all test results but one, all the tests so far are looking good. The missing test result is one that is done against the extracted bone marrow, this test is much more sensitive in checking for any residual myeloma cells left in the bone marrow. So even if the blood tests have no tumor markers, this test goes a little deeper. Without this test the doctors cannot declare I am in complete remission.

My white blood counts continue on a steady decline, which is either from a medication by the name of Bactrim; that I take on the weekends; or just my body adjusting from the stem cell transplant. The doctor states there are other medications, but Bactrim is the best, so he won't change this medication until I am closer to being neutropenic. My current neutrophil count is 2.1, with a WBC of 3.01.

I have been feeling pretty good the last few weeks, pretty much back to normal, which means I am getting a little stir crazy, especially with all the rain this week.

Doctors won't let me go back to work full time until I get the the results from the missing test, so I am part time for two more weeks.

Be sure to wear yellow on Sunday October 2 - Livestrong Day, to show your support in the fight against cancer.

September 2011 - Day +66

Today is Alli's 16th Birthday, what did Alli want to do on her Birthday? Play tennis with her Dad. We played a full set of tennis and I lost 3 games to 6. Not bad since I have not played for 5 months. It was a lot of fun, my legs haven't had that kind of workout in a while.

She looks like a pro! This picture was taken last weekend at a tennis match.

September 2011 - Day +63

Back to the hospital today for some tests for re-staging. The day started off with some of the worst rush hour traffic we have experienced. One of the commuter trains was delayed an hour, so many people decided to drive creating overwhelming traffic delays. It took us over two hours to get into the city. I was thankful to have Jane as my copilot, without her I think I would have lost my mind in the traffic.

Today I had a full skeletal scan, which consisted of about 20 Xrays. Every bone in my body was xrayed except my hands and feet. The Xrays are used to look for bone lesions, which is common with advanced stages of Myeloma. I have had two previous skeletal scans that have come out clean.

Next was blood draws, about six vials of blood. The blood tests consisted of Light Chains, Beta-2 Microglobulin, Quantitative Immunoglobulins, Immunofixation Electrophoresis and a couple others. At diagnosis my Lambda Light Chains were extremely high, before the stem cell transplant the light chains were normal.

Finally was the bone marrow biopsy. I had two previous bone marrow biopsies done at my local hospital, but today's I decided to have at Rush University. Today's bone marrow extraction was extremely painful, I believe I let out a verbal scream or yelp. What was different from the past bone marrow biopsies? Today's technician stated the bone marrow had to be extracted quickly where the other ones were not done that way, wow what a difference. Just to recap, my first bone marrow biopsy showed 80-90% plasma cells, the second (before the stem cell transplant) showed less than 5% plasma cells. A normal person will have less than 5% plasma cells.

Now we wait to get the results next week, if all is good I will be released to go back to work full time. If all is not good a second stem cell transplant would be discussed.

The last couple weeks I have been feeling really good. I have been walking 2 miles a day. Yesterday I even washed my car with the help of Jane, but this didn't go off without a hitch. I cut my finger while drying the car or I guess I should say drying the engine. Jane felt terrible about this, though it was not her fault.