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Guicho

New survivor and looking for support groups in San Diego

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I am a 62 years old Mexican male diagnosed on 2-2020 with Lung Cancer IV (Adenocarcinoma) Last week, I started oral treatment with Alecensa. The side effects are swelling in my feet and ankles. My cough have decreased and I am able to sleep much better at nights. I live in San Diego CA. I like to find support groups in San Diego in English-Spanish but not required. Thank you!

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Guicho ... welcome to the forum. I'm on the other side of the country in Tennessee so can't help you with local support groups.

My wife has small cell lung cancer so I wont be able to help much with non-small cell but there are plenty of folks here that may be able to answer any questions you have.

Steve

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Hi Guicho,

Sorry you have to be here but glad you found us and welcome to an online support group. I hope that this forum will provide you with any answers to your questions or concerns. It's a very tough road to be on and we have all been there in some form or another.. 

 I lived in Imperial Beach/Egger Highlands so I am a little familiar with the San Diego area. I still visit the area frequently as my son lives there. I have Scripps MD Anderson in La Jolla as a backup should I need care. I was diagnosed in August of 2018 with Stg 3 NSCLC (Adenocarcinoma).

Your oncologist and Nurse navigator should be able to refer you to a support group in your area. You can also post your concerns and questions here on Lungevity. 

It's very good to hear that your cough has decreased and that you are sleeping better. Do you have any specific questions about your care, about your cancer, about your medications, about finances, about any side effects you may be experiencing?

Hope to hear back from you soon.

Take Care, DFK

 

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Welcome Guicho,

I am an Alecensa (Alectinib) user as well. I've been on it since November 2019, so about 4.5 months now.  I was diagnosed Stage 3A NSCLC (AdenoSquamous) in the Spring of 2018. After all the chemoradiation, and then being put on Immunotherapy (Durvalumab) for 8 or 9 months and then showing signs of progression, I convinced my ONC to have me biomarker tested. This resulted in finding out that I was PDL-1 Negative and ALK+. I was then switched over to the Targeted Therapy TKI Alectinib. Some side effects such as fatigue and shortness of breath I still have, along with constipation being my major complaint. I will mention that I just had a CT last week that indicated signs of continued progression which the ONC believes may be the squamous portion of my adenosquamous NSCLC progressing. He is arranging a second opinion consult with The Ohio State University James Cancer Center. I also have become very anemic while on Alectinib, and had my first iron infusion last Friday. This could also be part of the reason for the shortness of breath with any exertion. My suggestion is to make sure that your ONC stays up with the blood tests and request/demand that they be done on a regular basis, even if you feel good. Some of the things tend to creep up on you and then you find yourself treating other ailments in addition to the NSCLC.  

Well enough about me. Since you went straight to Alecensa, we are assuming that you have had biomarker testing and found to be ALK+. (?) There are a few members here that are ALK+ such as Rower Michelle and myself, so feel free to ask any questions. I will follow up with a post of a private group on Facebook that is strictly for ALK+ patients and their caregivers. It is a very active group with around 2,000 members, many of which are international. I am sure that many speak Spanish. 

Anyway, welcome to group and feel free to reach out at anytime.

Ron

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Hello Guicho,

Welcome to the best on line support group.  I’m so sorry to learn about your diagnosis and understand the need for support.  I was diagnosed In September, 2018, started taking Alecensa in October,2018.   The GO2FOUNDATION also has a list of support groups.  
 

There are some special resources for people taking Alecensa, www.alkpositive.org and a private Face Book page for ALK Positive Lung Cancer.   These are great resources for people like us.  
 

There are some side effects from Alecensa also called Alectinib at the below link  

https://static1.squarespace.com/static/5b6cc61596d4557796b187fe/t/5c50df3cc74c507564e98e64/1548803900278/ALK-Positive_Medication-Help_Alectinib.pdf

 

Please tell your doctor about the swollen feet and ankles.  It could be a sign of fluid retention which can be easily improved with a prescription for Lasix. I had a similar issue.  My shoes never fit the same again and now I have Crocs in four different colors.  I try and walk every day, this helps too.  
 

Please be very careful about sun exposure as photo sensitivity is a big side effect. Sun burn can occur in about 20 minutes. 
 

The good news here is that Alecensa works. My cough disappeared and other than fatigue and weight gain, I’m doing really well.  
 

Nice to meet you, all the best,

Michelle

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Guicho, As Michelle mentioned; "There are some special resources for people taking Alecensa, www.alkpositive.org and a private Face Book page for ALK Positive Lung Cancer".  To gain access to the Facebook Page, first go to the www.alkpositive.org webpage. Follow the links to fill out the registration, then within a day or two, you will be granted access to the ALK+ Facebook page.  Note that many create a special facebook page first that limits the personal info, but I chose to use my real FB page. Then within 1 week you MUST introduce yourself on the ALK+ Facebook page or your access will be removed. They normally send you a reminder first. This FB page is full of very experienced and knowledgeable people and many of the topics are at an extremely high technical level. Several of the members have direct access to and contact with some of the top researchers and Oncologists around the world. The page has a search function so you can search out various topics of interest that has already been discussed. I will note that they are somewhat quick to tell you to search first, before asking a question that likely has been discussed many time before. Not too sure I agree with this, but I also understand not filling up the pages with the same discussion over and over again. Anyway, if you are ALK+, I do highly recommend joining that support group on Facebook. There are likely 10 to 20 posts every day with a wealth of information. There is also a membership map that you can locate members in your area that are also ALK+. As I mentioned, the group has members from all over the world and I'd say about 50% of the posts are "international". Placing your name and location on the map is recommended, but not required.

Ron

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