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.