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ljayr's Message Board Messages

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Hi,

Our 42 year old, healthy, active daughter woke up a few weeks ago with a swollen, red, sore, tingly right arm.  She thought she had slept on it incorrectly and thought it would go away.  As the day wore on, the arm got worse, so she contacted her doctor. They did some scans and tests and discovered she has a blood clot in her right armpit.  Her doctor put her on a blood thinner (Xarelto) and referred her to a hematologist/oncologist for further testing.  That appointment is in a few weeks.  I did the wrong thing by googling an armpit blood clot, but that's what a mother does, right?  Anyway, there were a number of sites that said that many times a blood clot precedes a cancer diagnosis.  Has anyone had anything like this???  Another strange thing was that she had a mammogram a few days prior to this, so I'm also wondering if anyone has gotten a blood clot from having a mammogram?  Her mammogram came back ok.  Our family has had a lot of cancer, so if there is anyone out there that has had something like this and came back with a cancer diagnosis, please don't be afraid to tell me.  I'd rather have case studies and be prepared to help her fight this, instead of being in denial.  Thank you very much.  

PS....I was also going to tell you that if you go to the Oral Cancer page on this site and click on Nasal Cavity, there is quite a bit of information there, just in case your cancer isn't SNUC.

Keep us posted....

Best wishes,

ljayr 

ARF1974...I'm sorry you had to find this site, but from your post I want to commend you on doing so much research about your nasal cancer.  My brother had SNUC, and if you want to find out alot about SNUC, please consider joining the SNUC Family Facebook page.  It is a wealth of information for those fighting their SNUC battle, survivors, caregivers, etc. all with the common bond of SNUC.  It is a closed facebook group so you need to send a request to be accepted.  If joining this facebook group does not interest you, I may be able to answer some of you questions.

RE: Caregiving to parent with GBM stage 4

by ljayr - February 28 at 4:18 PM

Hi brennastonge,

I'm sorry for what you are going through with your mom.  It is a hard journey, but please be assured of this...you will never regret all that you are doing for her.

Is the Glioblastoma cancerous?  I'm assuming it is since you have said it is Stage 4...???  The American Cancer Society is a great source of resources.  My brother passed away from a rare sinus cancer in February, 2017.  The ACS patient navigator had given our family the ACS resources list along with the following:

  • American Academy of Hospice and Palliative Medicine

aahpm.org

  • Compassion & Choices

800-247-7421, compassionandchoices.org

  • National Association for Home Care and Hospice

nahc.org

  • The National Hospice and Palliative Care Organization
Also...I'm not sure how old your mom is, but did she qualify for disability and the disability benefits?  That would help with some care giver expenses.
The American Cancer Society was a great source of info for our family in our time of need.  Perhaps your local ACS can help...that is, if it is cancer.
I'm sorry I don't know much about Glioblastoma.  I do know a ton about sinus cancer, unfortunately.  More than I ever wished to know.
Hang in there, and keep asking questions.  This is a great site.  

RE: Sinus cancer?

by ljayr - January 18, 2019

Hello Raken,

I just got home from vacation and was catching up on some emails, etc.  What has transpired since your Jan. 6th post?  My brother had sinus cancer, so I may be able to answer some of your questions, but hopefully, your doctor has prescribed some medicine and you are all better by now.  I did find out on this site that anything with the sinuses can also be found in other cancer message boards...such as Head and Neck Cancer, Brain Cancer, or Oral Cancer (click on nasal cavity).  The Cancer Tutor videos were very interesting, so thanks to whomever posted them, too.  Like I said earlier, I hope you are feeling much better by now. 

RE: SNUC survivor

by ljayr - December 13, 2018

Hi Diana,

Congrats on your 6 year survival from SNUC!  I'm sorry to hear about your MS diagnosis.  Are you in the SNUC family facebook group?  I'd like to hear more about your diagnosis and treatment...but maybe I just need to read your posts further back OR you are already on the group.  My brother was diagnosed with SNUC in August, 2016 and lost his battle February, 2017.  Since it is such a rare, aggressive cancer, it is hard to find info, etc. about it.  His biopsy tissue was sent a few months ago to UofM hospital.  They have started a new SNUC research project again.  One of my first cousins has MS, so now I am wondering if there is some connection between the genetic makeup of SNUC/MS, etc.  Lots of rambling here.  I just get encouraged when I see anything with SNUC/SNUC survivor.  Congrats again!  I am very happy for you.  Merry, merry Christmas! 

RE: Glioblastoma

by ljayr - September 13, 2018

Hi Lollylegs,

Just checking in with you...how is your cousin doing?  Did you have your wedding already?

Hope all is going well for you-ljayr

RE: Glioblastoma

by ljayr - August 18, 2018

Good morning Lollylegs,

I'm so glad to hear your cousin is still with you.  Bless your heart for all you do for him...you are a great, great cousin!  I'm glad that he spoke to you after all that time, and that you got to see his smile.  What a wonderful memory that you will never forget.  His hospice team appears to be going a super job with his medication.  No seizures is so great, even though I feel bad that he has joint pain.  I think of all the cancers that there are, brain cancer seems to have the least pain at the end.  Most patients tend to sleep more and more and sleep away.  So many other cancers are extremely painful, especially near the end.  Enjoy your sleepover together :-)

I can't imagine the emotional roller coaster you are on right now with your favorite cousin dying and your wedding 4 weeks away.  You have alot on your plate, not to mention all the other etc. going on within your family, work and life in general.  It would be hard to keep priorities in order, if I was you.  When my brother was sick, all I could think of was him and taking care of him.  However, when "life events" (birthdays, anniversaries, weddings, etc.) were on the calendar, I was able to somewhat celebrate them, but my heart was always with him.  Your fiance' must be a very understanding and supportive person.    

Thanks for the update...It was good to hear from you.  You hang in there! 

RE: Glioblastoma

by ljayr - August 17, 2018

Hi mutt2679 and lollylegs,

How are you both doing?  It has been a busy month for me so I haven't been on my computer very much.  Mutt2679, I hope your brothers' wedding went well.  It was a very good touch to have a table set up with your dad's things...he would be so proud of you and the rest of his family.  Lollylegs, what is happening with your cousin?  I see there have not been any messages since Aug. 6th, but it could be that you two are doing private messages.  Just thought I would check in.

RE: SNUC Options

by ljayr - August 09, 2018

One more thing...there are some other posts, although most of them are rather old, under the "Oral Cancer" area of this site.  If you click on Oral Cancer, and then go to Nasal Cavity, you will see some old SNUC posts.

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About ljayr

Caregiver
Head and Neck Cancer

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