November Update

Dear family and friends,

 

Last Wednesday my oncologist stopped my trial drug for 4 days because my neuropathy was getting worse.  There is a nerve in my chest that is paralyzing my right vocal cord  along with the other neuropathy symptoms I am having.  Yesterday I had a Ct of the chest, abdomen, and pelvis earlier than scheduled because I was so weak and short of breath.  The scans did not show any reason for the weakness so the doctors believe this is also a side effect of the trial drug.  Today I am feeling a bit better.  I will start taking steroids for 6 days to help my breathing.  

 

The CT scan showed the cancer in my lungs is stable, but I now have three metastatic lesions in my liver and one on my adrenal gland.  This means cancer growth in the abdomen which was not there before.  I will not continue with this trial drug since the side effects are great and it is not working in all areas of my body.  

 

I have a couple of standard chemotherapy options and I can be put on a wait list for a new trial.  At this time, I hope to have a more detailed phone conversation with my oncologist in Boston about options.   Today I talked with a "fellow".  

 

I will have a brain MRI on Friday to see if the cancer has spread any more to the brain.  Please pray for no metastatic lesions in the brain and that God would stop the progression of this disease.  Please be in prayer over my circumstances and ask the Lord to lead and guide my decisions.  I know that God is in control and His plan is perfect even when it doesn't seem perfect to us.  We need to praise Him in the storm for His love, kindness, grace, and mercy.  Thank you for your continued prayers, words of encouragement, love, and kindness to me.  God bless you.

 

In His hand and with love,

Sue

How October was

Dear family and friends,

Last week in Boston was a bit rough.  I was sick all 5 days we were there, mostly because of the bronchoscopy.   The doctor did a biopsy and found that there are cancer cells inside one of the bronchial branches and it is obstructed 85%.  The cancer cells are irritating nerves in the bronchial branch and causing me to have a bad cough.  I have been taking a steroid for the cough and other medicines and they are helping.

The new genetic treatment gives me fatigue and makes me nauseous for a few hours in the morning, but after eating and resting I feel better in the afternoon and evening.  

Gary and I will fly back to Boston tomorrow, Wednesday, and return home on Friday.  We will have 2 more trips in Nov. to monitor my blood and how my body is reacting to the new drug.

I am grateful for this opportunity that the Lord has provided for me.  He has opened the door for me to be under such specialized care.  Please thank Him with me and pray that this new treatment will reduce the cancer in my body.   Psalm 32:8 says the Lord will instruct you and teach you in the way you should go and He will counsel you with His loving eye upon you.  (My paraphrase)

Thank you for your love, prayers, and support.

In His hand and with love,

Sue

Next Step...Boston

Dear family and friends, 

I am 99% sure I will go to Boston for my next treatments.  They have a phase 1 trial that I qualify for.  I was hoping for a phase 2 or 3, but I feel encouraged about it.  It would be a pill and I would stay 5 days the first week, then go once a week for 4-5 weeks, then once a month as long as it is working.  Nurses at Massachusetts General Hospital said this is the best Dr in the country for my EGFR mutation.  They even have a Dr that specializes in the next level of my mutation which is Exon 20 insertion.  I am pleased!  I will pray more about this decision in the next days, but I am hopeful this is where the Lord wants me.  I could start within 1 week to 1 month.  Thank you for your prayers and encouraging words.  Praise God from whom all blessings flow!

In His hand and with love,

Sue

Clinical Trials

Hi everyone,

I wanted to let you know that Washington University has 3 clinical trials that I qualify for.  Two of them are phase 1 which means they have never used the chemicals on people before.  The other is a phase 2 trial and requires another biopsy.

The oncologist thinks trials are good and that a patient can always get the regular treatment, but a patient may not always qualify for a trial.  Sometimes too many previous treatments can disqualify you.

I hope Boston will have more to offer me.  Thank you for your prayers.  I will keep you informed.

In His hand,

Sue

Praise Report!

Dear family and friends,

I have good news!  Praise the Lord with me for answered prayer!  My MRI Spectroscopy showed no new tumor growth. I truly believe God worked a miracle in my life.  This week in Chicago, the radiation oncologist made a mask for steriotactic radio surgery and said he would be ready to treat me next Wed. if I had new tumor growth.  I believe he was confident it was cancer. 

 I have texted with Dr. Fidias, my first oncologist, and he said he would start the process to get me to Boston to go to Massachusetts General Hospital.  Dr Fidias has a colleague there who works specifically with the gene mutation that I have.  

Please pray for God to give wisdom to  these doctors and to me.  I am asking the Lord to open the correct doors and close those He does not want me to walk through.  

I can not express my gratitude to the Lord and to all of you who have prayed so diligently for me.  Thank you so much for your prayers.  The Lord is gracious and merciful to me. Please join me in praising the Lord and thanking Jesus for answered prayer. 

In His hand and with love,

Sue

Urgent Prayer Request

Dear family and friends,

I would like to ask you to pray a specific prayer for me.  On Tues, Sept 13th I am going to have an MRI spectroscopy to determine if 2 of the tumors in my brain are increased in size because of tumor growth or radiation swelling.  I will not have results for at least 4 days.  I just found out the if the growth is due to cancer, I will be excluded from any clinical trials and probably from genetic therapy.  Please ask the Lord for mercy in this situation and pray that the increased growth is only swelling.

I am also needing direction for my next treatment.  I am communicating with my previous oncologist, Dr. Fidias, from Az.  He is now in New Hampshire and looking for a new treatment option for me.  Please pray for wisdom for Dr. Fidias and for the Lord to lead and guide me in all my decisions.  Ps 119:105  Your word is a lamp unto my feet and a light unto my path.  Right now I feel like a have the light of a lamp at my feet.  Not much light, but enough for the next step.  

Thank you for your support and prayers on this timely matter.  I will update you as soon as I know something.  Praise the Lord for His goodness to me.

In His hand and with love and gratefulness,

Sue

Bad Results

Dear family and friends,

I did not receive good news this week.  My cancer has spread to T6 in my spine.  I also have new tumors in my lungs and the old tumors have grown.  The immune therapy did not work at all over this 6 month period of time.

I have 2 possibilities at CTCA.  I must wait about 3 weeks to see if I qualify for a gemomic treatment.  The other option at CTCA is a highly toxic chemo therapy.  My oncologist is recommending I go to MD Anderson in Texas to see if I might qualify for a clinic trial.

Please pray that the Lord will lead and guide me in my decision for my next treatment and where to go to get it.  I am planning on pursuing MD Anderson in the next few weeks.  Please also pray that I will not be discouraged and I will keep my eyes on the Lord.  Thank you for your prayers, love, and support.

In His hand and with love,

Sue