Maryland Support Groups?

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L2saint
Posts: 12
Joined: Tue May 31, 2016 7:12 am
Location: Ellicott City, MD

Maryland Support Groups?

Postby L2saint » Tue May 31, 2016 7:23 am

Hi, I live in Ellicott City, MD and was diagnosed last spring with stage 3 rectal cancer. I was 41 at the time! I'm now 43 and done with treatment, but still feeling shell-shocked and eager to connect with others who are dealing with this disease. My efforts to locate a support group in Central Maryland have led nowhere, and I was recently told that even the ones run out of Hopkins (Hopewell up near Towson) seem to have come apart. If you are interested in starting something, please let me know. I have some contacts at the Howard County General Hospital and the Hopkins Colorectal Cancer Survivorship Clinic who have offered to help, I just need some folks to come forward so we can figure out how coordinate it.
Rectal cancer diagnosed April 2015
Chemo + radiation May-June 2015
Proctectomy + TME + ileostomy September 2015
Started CapeOx chemo October 2015
Finished treatment March 2016
Ileostomy reversed April 2016
Port removed May 2016
Fingers crossed...

Ragman
Posts: 22
Joined: Mon Mar 21, 2016 9:01 am
Location: Baltimore, USA

Re: Maryland Support Groups?

Postby Ragman » Tue May 31, 2016 10:57 am

Hello L2Saint,

I live in Towson. I am interested in starting/participating in a support group. I've been kind of on the fence about it since I've never participated in a support group. But if we get some momentum I'm open to participating.

Thanks for reaching out!
44 yr. old male w/family to live for
Rhabdomyosarcoma - Stage III -- dx 21yrs old -- 1991 & 1992 (surgeries, chemo, & rad)
Colon Cancer - Stage IIC -- 2014
Small bowel and Transverse colon resection -- 2014 (w/adjuvant chemo in 2015)
2nd primary discovered in colon - 2015
Total colectomy w/ileorectal anastomosis - February 2016
*More cumulative exposure to radiation in my life than a resident of Nagasaki in 1945*
"You are only as healthy as you feel" - Travis Bickle from Taxi Driver

L2saint
Posts: 12
Joined: Tue May 31, 2016 7:12 am
Location: Ellicott City, MD

Re: Maryland Support Groups?

Postby L2saint » Tue May 31, 2016 11:22 am

Good to know. I'll keep you posted. My surgeon said he's had four new patients in our (relatively young <50) age range since my diagnosis. I gave him permission to share my contact info, but guessing they are in the thick of treatment and overwhelmed, so hoping to find some folks on here. Who knows maybe some of them are on here right now.
Rectal cancer diagnosed April 2015
Chemo + radiation May-June 2015
Proctectomy + TME + ileostomy September 2015
Started CapeOx chemo October 2015
Finished treatment March 2016
Ileostomy reversed April 2016
Port removed May 2016
Fingers crossed...

zx10guy
Posts: 232
Joined: Mon Jan 07, 2013 12:54 pm

Re: Maryland Support Groups?

Postby zx10guy » Wed Jun 01, 2016 11:04 am

Check your PM.

Joecool1983
Posts: 44
Joined: Sat Jun 11, 2016 12:45 pm
Facebook Username: Joseph Piazzola

Re: Maryland Support Groups?

Postby Joecool1983 » Sun Jun 12, 2016 8:23 pm

Hey, my name is Joe. 33 years old. Linthicum, MD. I was diagnosed with colo-rectal Cancer on December 17, 2015. Had radiation and chemo from mid-January to mid-February. Just had surgery 2 months ago. April 11th. Currently getting IV chemo treatments. Folfox. I would definitely like to talk to people in MD and participate in any support groups.
Diagnosed 12/17/15- 32 years old- Tumor 3"x1.5" at the Rectosigmoid Colon
Stage IIIA T3N1M0
Radiation and chemotherapy(Xeloda pill form) January 2016- February 2016
4/11/16- Surgery to remove the tumor/colon resection. Robotic LAR/Dissection of Lymph Node. 1/19 showed any involvement
5/16-10/16- Follow up chemotherapy- FOLFOX, 8 Treatments
1/17- Routine CT scan found 3 Metastases on my Liver
4/17-8/17- 5 Treatments Avastin/Irinotecan

L2saint
Posts: 12
Joined: Tue May 31, 2016 7:12 am
Location: Ellicott City, MD

Re: Maryland Support Groups?

Postby L2saint » Tue Jun 14, 2016 7:57 am

Update: I reached out to social workers at HopeWell and the Mayer Cancer Center here in Howard County. So far only the Claudia Mayer/Tina Broccolino Cancer Resource Center has responded. The next step is to schedule a meeting to line up a meeting space, a facilitator and a process for communicating to the survivor community. Doesn't seem that difficult, but apparently this stuff takes time and I may have to do some leg work to prove there is enough demand to justify using the resources.

I will keep you all posted and let you know as soon as we have a date/location.
Rectal cancer diagnosed April 2015
Chemo + radiation May-June 2015
Proctectomy + TME + ileostomy September 2015
Started CapeOx chemo October 2015
Finished treatment March 2016
Ileostomy reversed April 2016
Port removed May 2016
Fingers crossed...

mgraham
Posts: 6
Joined: Wed Jun 18, 2014 6:55 pm

Re: Maryland Support Groups?

Postby mgraham » Wed Jun 15, 2016 10:12 pm

My name is Mike, I'm 44 and liven in Odenton. I was diagnosed with CRC 2 years ago nearly to this day. I underwent endrorectal brachytherapy at Johns Hopkins, surgery, and then chemo. If there's a meet up, I'd love to participate.

Ragman
Posts: 22
Joined: Mon Mar 21, 2016 9:01 am
Location: Baltimore, USA

Re: Maryland Support Groups?

Postby Ragman » Thu Jun 16, 2016 8:47 am

Thanks so much for the update and diligent work, L2saint!
44 yr. old male w/family to live for
Rhabdomyosarcoma - Stage III -- dx 21yrs old -- 1991 & 1992 (surgeries, chemo, & rad)
Colon Cancer - Stage IIC -- 2014
Small bowel and Transverse colon resection -- 2014 (w/adjuvant chemo in 2015)
2nd primary discovered in colon - 2015
Total colectomy w/ileorectal anastomosis - February 2016
*More cumulative exposure to radiation in my life than a resident of Nagasaki in 1945*
"You are only as healthy as you feel" - Travis Bickle from Taxi Driver

Ragman
Posts: 22
Joined: Mon Mar 21, 2016 9:01 am
Location: Baltimore, USA

Re: Maryland Support Groups?

Postby Ragman » Thu Jun 16, 2016 9:39 am

Sorry - double post.
44 yr. old male w/family to live for
Rhabdomyosarcoma - Stage III -- dx 21yrs old -- 1991 & 1992 (surgeries, chemo, & rad)
Colon Cancer - Stage IIC -- 2014
Small bowel and Transverse colon resection -- 2014 (w/adjuvant chemo in 2015)
2nd primary discovered in colon - 2015
Total colectomy w/ileorectal anastomosis - February 2016
*More cumulative exposure to radiation in my life than a resident of Nagasaki in 1945*
"You are only as healthy as you feel" - Travis Bickle from Taxi Driver

L2saint
Posts: 12
Joined: Tue May 31, 2016 7:12 am
Location: Ellicott City, MD

Re: Maryland Support Groups?

Postby L2saint » Thu Jul 21, 2016 5:10 pm

Well, I finally heard back from the Claudia Mayer/Tina Broccolino Cancer Resource Center.

Based on the Center's data (we only have access to intake data from persons who utilize the Center), there are quite low numbers of persons with this diagnosis. There are other disease sites with significantly larger numbers that we don't have site-specific support groups for so it's a difficult argument to make. We do offer a general cancer support group which theoretically could include those with colorectal cancer. While it’s not specific to that diagnosis alone, it is inclusive of it. I know this is probably disappointing.


It was also suggested that I look into the Coach to Recovery program through the American Cancer Society. Since I am still < 1 year out of treatment, I am not eligible to be a coach, but that may be something I'm willing to do down the road. Doesn't help us right now, though.

I'm a little disappointed that an organization with the backing of Johns Hopkins, and located in such a diverse and thriving area as Howard County, doesn't have a better way to pull patient data. There's an oncology practice across the hall...they are affiliated with Hopkins. Why are they only using data on patients who self-identify to them? And yes, I did mention that in my reply, but such is the way of the world.
Rectal cancer diagnosed April 2015
Chemo + radiation May-June 2015
Proctectomy + TME + ileostomy September 2015
Started CapeOx chemo October 2015
Finished treatment March 2016
Ileostomy reversed April 2016
Port removed May 2016
Fingers crossed...

L2saint
Posts: 12
Joined: Tue May 31, 2016 7:12 am
Location: Ellicott City, MD

Re: Maryland Support Groups?

Postby L2saint » Thu Jul 21, 2016 5:17 pm

I have an appointment with a physician at the Hopkins Colorectal Cancer Survivorship Clinic next week. I will be sure to ask about support groups, and see if they have the patient data (numbers) to support such an initiative.

BTW, check out their page - I feel like this resource may be underpublicized and underutilized.
http://www.hopkinsmedicine.org/kimmel_c ... rship.html
Rectal cancer diagnosed April 2015
Chemo + radiation May-June 2015
Proctectomy + TME + ileostomy September 2015
Started CapeOx chemo October 2015
Finished treatment March 2016
Ileostomy reversed April 2016
Port removed May 2016
Fingers crossed...

Soccermom2boys
Posts: 218
Joined: Tue Nov 10, 2015 10:29 pm

Re: Maryland Support Groups?

Postby Soccermom2boys » Thu Jul 21, 2016 10:15 pm

Hey--just my two cents, but why don't you all just pick say a church hall type of place that is relatively central and say lets all meet at 7 on the third Wednesday of the month (or whatever time/day works best)? I realize no facilitator would be involved, but I would think just getting together to meet and discuss with each other face to face would be a good start and then perhaps after a few sessions you can find someone or each of you take turns each month lining up a guest speaker whether it be a mental health or nutritionist or alternative medicine, etc. person. Blows my mind that with colorectal cancer being the second or third leading cancer that there isn't more in the way of support for us, especially since we do have our own unique needs physically with the treatment(s) involved. I am in your neighboring state, Delaware, and our cancer support meetings do not include colorectal cancer either as I looked thinking it might be nice to meet with people going through the same issues--thats how I came across this forum, thank goodness for Colon Club!
8/3/15 Went in with a hemorrhoid, came out with a tumor
8/12/15 Biopsy from colonoscopy confirms RC (45 yrs old--zero family history!)
9/21 - 10/29/15 chemorad 28 tx (with Xeloda)
12/17/15 APR with perm colostomy
Pathology report stages me as IIIA (T2N1M0)--1/15 LN detects cancer
2/3/16 chemo port inserted
2/8-6/2/16 8 rounds of Folfox

L2saint
Posts: 12
Joined: Tue May 31, 2016 7:12 am
Location: Ellicott City, MD

Re: Maryland Support Groups?

Postby L2saint » Tue Aug 02, 2016 9:15 am

Hello again!

My appointment with Dr. Youngjee Choi at Johns Hopkins last week was well worth the time! She spent an unprecedented 90 minutes with me, gathering history and information about my current health concerns. She also connected me with a bunch of resources - nutritionists, genetic counseling, physical therapists, and most importantly - Tam Warczynski, the Nurse Practitioner who is charged with coordinating Johns Hopkins Colorectal Cancer support! So...while not a traditional meet-up-type support group, there is a Rectal Cancer Support Group seminar being offered at Hopkins on Friday, September 15 from 5-7pm in the Auditorium of the Harry and Jeanette Weinberg Building. If you're interested in attending, or just want more information about Colorectal Cancer support at Hopkins, please contact Tam Warczynski at twarczy1@jhmi.edu.

Hope this helps!
Leslie
Rectal cancer diagnosed April 2015
Chemo + radiation May-June 2015
Proctectomy + TME + ileostomy September 2015
Started CapeOx chemo October 2015
Finished treatment March 2016
Ileostomy reversed April 2016
Port removed May 2016
Fingers crossed...

L2saint
Posts: 12
Joined: Tue May 31, 2016 7:12 am
Location: Ellicott City, MD

Re: Maryland Support Groups?

Postby L2saint » Thu Oct 06, 2016 8:50 pm

Hi all,

I attended the support group at Hopkins on September 16th. It was a good experience. It was my first time having face-to-face interactions with other survivors of this disease. I urge anybody who is interested to reach out to Tam. Technically, the programs are for Hopkins patients, but they are working to build a "Rectal Cancer Center of Excellence" at Hopkins, and it is well worth looking into their offerings.

Leslie
Rectal cancer diagnosed April 2015
Chemo + radiation May-June 2015
Proctectomy + TME + ileostomy September 2015
Started CapeOx chemo October 2015
Finished treatment March 2016
Ileostomy reversed April 2016
Port removed May 2016
Fingers crossed...

User avatar
Marylandmaniac
Posts: 234
Joined: Wed Jun 29, 2016 6:22 pm

Re: Maryland Support Groups?

Postby Marylandmaniac » Fri Oct 07, 2016 4:08 pm

I live in Germantown Md so more in the DC Metro area. A support group would be great. This board has become that for me in many ways but it is nice to meet face to face with others going through this. I just finished 4 rounds of FOLFOX and am going to be scanned next week. Depending on what it shows my team of doctors will discuss what the next phase should be. My CEA number has dropped which is encouraging.

So if anyone is around this area, let me know.
DX 6/29/16 7 cm tumor, 10 cm fr av
CT scan ab,MRI abdomen - 9mm spot on liver,CT scan of chest lungs clear
Special staging MRI - clinical staging stage 3b - T3N2M0 (unless spot proves to be met)
8/11 PET scan - spot lit up not nodes
8/16 Port in, 8/17 liver microwave abltn - spot gone
8/23 6 rds FOLFOX started
PET scan 10-13 43% red of tumor and no mets shown
Exam tumor greatly reduced. Surgery 12-14-16.
Clear margins, 7 out of 13 nodes positive. Tumor 2.1 cm
Kras wild, MMS, not MSI. 6 more rds FOLFOX


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