Leiomyosarcoma Support Group of Georgia

It is with much sadness, that I relay this message this morning. I just learned that Cathie Boyles, who was a long time member and one of the toughest fighters in this group passed away on October 23rd. Cathie was such an inspiration to everyone in this group.

Send a message to learn more

What is the caregiver's role in the LMS journey?

1) Find a support group
2) Nutrition
3) Ask Questions
4) Awareness/Advocate
5) Love Unconditionally

As a caregiver in 2018 and 2019 when my husband's LMS journey began, I was unaware, uneducated, and had no idea what this journey was all about. In the beginning I looked for any and all information that I could find. Let me just say Google can be your friend or it can be your worst enemy. I would go to the doctor appointments and hear medical terminology I did not understand, and then I would try to note mentally the word I heard so I could look it up later to get a better understanding. But the caregiver's journey is so much more than medical terminology. While educating yourself is a great start, the caregiver is the biggest support system/advocate for the patient/loved one.

As a caregiver, it was my role to make sure my husband ate something several times a day even when his appetite was waning. Nutrition is necessary to make sure the body gets the nourishment it needs. On our journey we were given options for drinking protein shakes verses a meal, although it should not be considered a meal replacement. During my husband's journey we learned that carbs was his friend he loved pasta and would eat it when nothing else would appeal to him. At each appointment, I saw that they gathered weight, BP, Blood Sugar, as well as temperature. It wasn't long that I realized they were using this information to determine the amount of chemo he would receive that day.

Please take notes at home and at the doctor's appointments. There is no such thing as a dumb question. If the doctor says something that you do not understand or you want more of an explanation always ASK! If you have a question about something you observe or if your loved one/patient is acting out of character, write it down and ask at the next appointment unless it is so severe that medical attention is needed immediately.

As a caregiver you are going to be more inclined to recognize things before your loved one/patient says anything. Chemo Brain is real! I noticed many times my husband would just go with what was being said but never really heard what was said. He would say something contradictory to what the Doctor had said and I would have to say that was not what was said and then have to explain it to him again. Its important to not get frustrated because they don't hear what you hear, just redirect and explain.

My husband was a 24 year Veteran of the Army and was proud that he had served this country as an Airborne Ranger. He did 3 tours of duty during his military career. He was at the Burn Pits in 1990 during Desert Shield/Desert Storm. He came home unscathed each time but fought the hardest battle of his life with his own body.

His diagnosis came after a trip to urgent care for a cough that would not go away. An x-ray of his lungs revealed mets and we were told to go immediately to an ER and have a CT scan done. The ER confirmed in March 2018 that in addition to the mets in the lungs that his liver and kidney were also showing mets. We left the ER that night thinking we had Renal cell carcinoma. Within a weeks, after a biopsy done on the liver, we found out he had LMS. We never knew where his LMS originated, but he had external lumps on his arms, back, legs, and buttock. Internally the disease had infiltrated his lungs, liver and left kidney. He was stage 4. He was never a candidate for surgery as we were told he had to many tumors and surgery would prohibit him from getting the chemo treatments he desperately needed. Our Oncologist felt that chemo was the better choice for him. There were good days and then there were many not so good days. He tolerated the chemo fairly well, with the usual side affects - lethargy, weakness, loss of appetite. But he never lost his smile nor did he ever complain! For 19 months he had various chemo's given to him to fight this disease and a round of radiation to shrink the tumor in the groin of his left leg.

This walk was very hard for me to watch a military warrior get defeated. I kept my relationship with God and although I will never understand why he chose my husband, I will continue to praise him for all that he does. I miss my husband, who was the love of my life; but I know that I will see him again one day.

Leiomyosarcoma is a rare cancer that affects 1 out of 100,000 people in the United States. Typically an average of 1200 people are diagnosed annually. Uterine Leiomyosarcoma is the subtype that is found in females. The National Cancer Institute estimates that 1 in 1 million females are diagnosed each year with this rare cancer. This cancer is not specific to females only, males are also diagnosed with LMS.

Everyone's journey is different. Treatment options - chemo or radiation vary per person. There has been advances made in LMS research. After your initial diagnosis it is best to see a sarcoma specialist for plan of action specifically to your LMS diagnosis.

Hope you can pull up a chair and join fellow patients in a free form discussion. PM Caroline Abbey for pass code / link.

Hello to everyone. We held our first Zoom meeting today. Caroline and myself (Tammy) feel that it is a great way to host future meetings so that everyone can attend from the comfort of our home. We are meeting again on July 13, 2025. Please watch the group messenger for the link to join the meeting. Thank you Hayden for joining us today.

Hello Everyone,
A message was sent in messenger to everyone in the support group last night regarding a Co Group Leader as well as future meetings. If you have not checked that message please do so as we need to act quickly on this and get something in place. We will also need to notify the professionals at Winship Cancer Center to let them know what we have done. As stated in the message last night Eddy and Cindy are planning to move to Alabama to be closer to their daughter and grandson and Eddy would like to see this group continue on. I have volunteered to step up as Co Group Leader but we need another Co Group Leader who is currently on this journey that can provide insight as to things that current in the world of LMS. I have only been a caregiver and since my husband passed in 2019, I have not been back in an oncology office.

Hey everyone!

Wanted to update everyone on the monthly LMS Meetings.

On Feb 9th we had our meeting and made the decision to have our future meetings on even months verses every month. This will also allow us to have our August meeting to honor our first meeting. The new meeting schedule will be Feb, Apr, Jun, Aug, Oct and December.

This will allow us to continue to make relationships and also better time frame to get guest speakers scheduled.

Our next meeting will be April 13th. Time will continue to be from 1pm-3pm.

Lastly, I shared with the group that I am looking for someone to take over leadership of the group. I have enjoyed starting the group and leading it. I know there has been some great relationships that have been made and some important discussions had.
Cindy and I have decided to move to Alabama to be near our daughter and grandson. Trusting that God will provide that leader.

Oct. 24:

From COPING MAGAZINE - Sarcoma patient stories and more . . . .

[https://copingmag.com/sarcoma/](https://copingmag.com/sarcoma/)

[A Prescription for Exercise » Coping with Cancer Magazine (copingmag.com)](https://copingmag.com/a-prescription-for-exercise/)

[https://copingmag.com/a-prescription-for-exercise](https://copingmag.com/a-prescription-for-exercise)

A Prescription for Exercise » Coping with Cancer Magazine While your doctor is the only one who can make exercise recommendations specific to you, here are some exercise guidelines most cancer survivors can follow.

https://www.vumedi.com/video/esmo-2024-summary-highlights-of-important-trials-in-sarcoma/

ESMO 2024 Summary: Highlights of Important Trials in Sarcoma A video from Robin Jones (as part of 2024 ESMO Annual Meeting Insights Hub), posted on Oct 9, 2024.

Hey everyone! I hope that you are having a great week.
I wanted to reach out to everyone and let them know that we will not be meeting this Sunday May 12th even though it is the second Sunday. With it being Mother’s Day we have moved our meeting forward a week to May 19th at the same time as always 1pm-3pm.
Look forward to seeing everyone. This meeting is for patients and their spouse/caregivers.
Mathew’s Cafeteria
2299 Main Street
Tucker, Ga 30084
1pm till 3pm

Happy New Year!

We kick off our new year with our first meeting on Jan 14th 2024.
We will meet as always at:
Matthews Cafeteria
2299 Main Street
Tucker Ga 30084
Time is from 1pm till 3pm.

Come see us and meet others that are also fighting LMS and their caregivers!