Jump to content

I'm new here, to this board...


chani

Recommended Posts

Hello everyone,

I posted an introduction to the late stage NSCLC area. Then my second look at the site, in order to learn it, I noticed that what I should have done was post and intoduction here... :roll:

Yesterday I wrote out a well thought out post. I then went to edit it and I lost it all... :x I called my pops to talk with him while as I cooled my disappointment from losing my post, and while talking to him he asked me how he could get into a message board. "Hooray"!! " I said, and quickly attempted so set him up. Well, I misspelled his screen name which caused him to not be able to log in at his every effort. I misspelled Injunjoe...hummm. :oops: Because he wants to read and post, I will go briefly at my story so that he can tell his story. If he does not post than I will come back and introduce again his story. I have three sisters and I'm the youngest of the four. My parents and two sisters all live in different states. Myself and one sister live in the same state but not in the same city.

My dad's primary was on the top of his left ear. Squamous cell skin carcinoma. His dermatologist froze it three times and removed it twice. In March of last year...03 A diagnosis of head and neck cancer. He had a beard and did not notice the lump in his neck. April, 24-03 a Mohs surgery was done removing the top part of his ear. April, 25th-03 radical neck surgery was performed. June, 4th-03 radiation treatments began ending in mid July-03. November-03 CT scan performed of on neck and chest showing bilateral pulmonary nodular masses. Not present on prior exam from April, 4th-03. The November CT scan results came back on November, 19th-03.

My sister, discovered a lump in her breast November 20,-03. Diagnosed November, 21-03 with Breast cancer. Mesectomy performed November, 22nd-03 One lumph node affected and one satilite lesion. Extensive blood loss during surgery. Both my dad and sister began chemotherapy treatments in December-03.

All of us use to say to each other that we were so luck, that nothing really bad has happened to any of us. There are nine grandchildren and "almost" four great grandchildren, the four of us..sisters, and my parents. We have been hit hard and the cancer is trying it's best to destroy all of us. It's affecting all of us, and doing it's best to tatter our relationships with each other. We are all going through the stages of admittance, and all at different times, our reality of what has happened to us. Cancer, when it shows is ugly, evil head does not stop at immediate family, it sits back and lauphs as it watches what it does to relationship after relationship with marital lovers and significant others and with everyones friends. When my sister was diagnosed I remember I was at home alone and I hung up the phone and I yelled to myself "what! is going on." and then followed by "cancer is not going to wipe out my family" I then jumped on the phone and got two plane tickets, one for me and one for another sister and we flew up to be with our sister for her surgery. We had a blast together before the surgery day...lauphing and joking with each other. My two nephews, sons of the sister with cancer and their girlfriends and a great niece/grandbaby. We all piled into my sister's little house and we kicked up some dust...we did everything cancer does not like. We all supported each other with lauphter and hugs and kisses. Sure, the tears were there, many many tears while we sat contemplating how to tell our mom and dad/grandparents....talking with each other and our oldest sister,who could not get a flight to be there, continually on the phone. A dilemma it was, it was soon Thanksgiving and I was suppose to be at my folks for the big day. I had more plane tickets floating around than I could juggle, and mom and pops thinking I was to be picked up the day before and I had another ticket to be in on Thanksgiving day. My sister's doctor/friend ended up telling my parents. So, my mother flew up the day of the surgery and after it I flew to be with my dad. The cancer sitting back with it's heal kicked up thinking that a defeat was near...well, it wasn't and we are still ahead of the game. If your game is not over, all of us, everywhere, everybody who finds themselves battling the "destructive evil" :twisted: we can do it together and not let it take from us our good relationships with each other, our lauphter :D and especially our spirits. 8) the bright light that is within all of us. We will all get tired and mad, we will all shed many tears, but working together using message boards and sharing information we can help each other win the game.

I'm excited to be here and to share what I have learned. I'm also ready to learn whatever I can from all of you. The whistle has just sounded for another quarter of my family's game. And the ball is in our court!

Thank you!!

xoxo

Chani

Link to comment
Share on other sites

Hey Mo!

How's things going? How are you feeling??

I just wanted to share some insight with you regarding Chani's dad's cancer. As much as I would LOVE to encourage her to stay on our board, and she can do that, I have to tell you as I told her, that her dad does NOT HAVE LUNG CANCER. He has skin cancer that has spread and that is not the same as having lung cancer. He will not get the same types of treatments that we lung cancer patients get. I did share this with her on the Late Stage Forum, but she didn't seem to understand what I was saying. It breaks my heart when people think they are in the right place, and I would love to see them stay, but I wouldn't want anyone to give her idea's or advice and have it be wrong.

I just wanted to share that with you. I have shared with her the ACOR board. There she will find the RIGHT type of cancer and support that she and her dad will need to get for his type of cancer.

Hope all is going good for you. I'm getting back in the saddle. :roll:

This is going to be a GOOD YEAR FOR US MY FRIEND! I feel it in my BONES!! :wink:

Talk to you soon.

Hugs,

Connie

Link to comment
Share on other sites

Hello, Mo, :D

I'm happy to be here. I'm here to learn anything. Cancer is such a wide, wide topic with so many kinds and so many facets. I know that my dad's cancer is that of a skin, squamous cell carcinoma, that began on the top portion of his ear, which then matastasized to his head and neck and that now has moved into his lungs. Metastatic scc to the lungs. I want to make sure that others know this, and I also want others to know that I'm aware of this. Because his cancer is in his lungs, I now have an entire new area of the body that I must research and study. It's cancer in the lung/s, and in order to become familiar with the behavior cancer takes when it is in the lungs, I have come here to learn from those that are experiencing this, or that know extensively about it. I want to learn everything from what kinds of medications help when things get ruff, all the way to innovative treatments. Through my own obsessive research over the last ten months, and from the help of others on the head and neck message boards, I have learned about lung cancer even though this is not exactly what they have/had or what my dad has. And from the head and neck boards I learned of the live VATS, video assisted thoracic surgery. And much to my surprise two of my questions were answered. One of which was "could someone have this surgery done with a lung that contained sarcoidosis and tumors." Unfortunetly, my dad's tumors are too large for this surgery. I guess what I'm saying here, Mo, and to anyone that reads this post, is that I will be careful of what information I give out so that it does not give false hope or confuse anyone because the cancers are different. This was brought to my attention and I'm so glad that it was because sometimes I get too excited over new information and I blurt out what I have learned. Because my dad may not have a lot of time to waste, this could easily happen. As a supporter of two family members with cancer I tend to reserch everything just in case within something I read is an answer. I've had to limit my time and balanced my life so that I don't spend 24 hours a day researching...so, I've got to sign off now. But I will be back...excited about what I can learn from all of you.

Have a wonderful day, Mo....and thank you!

Chani

Link to comment
Share on other sites

[/qoute].....If your game is not over, all of us, everywhere, everybody who finds themselves battling the "destructive evil" :twisted: we can do it together and not let it take from us our good relationships with each other, our lauphter :D and especially our spirits. 8) the bright light that is within all of us. We will all get tired and mad, we will all shed many tears, but working together using message boards and sharing information we can help each other win the game.........

Thank you!!

xoxo

Chani

Why would we not want someone with this attitude on the board. Are we not all in the same basic fight? Do we not want acceptance? Who better to accept us than other cancer patients and caregivers. There is no other cancer support group on the internet like this one, If ACOR is so great why are we all here on LCSC. I think she'll be able to remember that the treatments people are receiving here are not the same ones her father is going to receive. Everyone needs comfort and support and I for one am happy she is here.

Cary

Link to comment
Share on other sites

Hi All,

I'm sorry! I don't mean to hurt ANYONE'S FEELINGS HERE, HOENST I am just looking out for EVERYONE best interest is all.

I facilitate a Lung Cancer Support Group, and this group like Breast Cancer Support Groups, and Prostate Cancer Support Groups are just that! The reason they are seperate is because of the difference in treatments, primary tumors, etc......

I am NOT trying to TURN ANYONE AWAY. HOWEVER, I AM saying that Chani may get the WRONG type of information here at the LUNG CANCER SURVIVORS for CHANGE BOARD, being that her wonderful father has Skin Cancer that has spread to the lung. And I want Chani to have the right information to share with her father.

It would be no different then if someone came to us for help that had breast cancer that has spread to the lung or prostate cancer that has spread to the lung. The treatments are NOT THE SAME! So PLEASE BELIEVE ME when I SAY I HAVE EVERYONE'S BEST INTEREST IN MIND HERE! I just don't want anyone to be mislead is all.

Chani, again, YOUR WELCOME TO STAY. I told you on my other message I welcome you with open arms. I'm just afraid we will not have the MEDICAL treatments, ideas, or experences that will benefit you is all.

And there are a LOT of people even on this board that belong to the ACOR group. ACOR.org has a Skin Cancer Group, and a Breast Cancer Group, Lung Cancer Group, etc......... They have them broke into groups so that all the people get the right information. I am sorry if my message was misunderstood. I hope this message helps to clear this problem up.

Link to comment
Share on other sites

Hello all,

(Neupogen a WBC booster shot) Earlier today I recieved an email from a women who belongs to another message board that I belong to. I had mentioned in one of my posts there about the WBC booster shot Neupogen that stimulates the blood system to make WBC's. My sister, who has breast cancer, recieved one the same day that her second chemo treatment began because without it her chemo would have had to be put off. My dad went in for his second chemo treatment, about three weeks ago, and he was told that his WBC was too low and that he was to come back in a week for his chemo treatment. So, he went home without his chemo treatment. When I heard that this happened I asked my mother to ask the oncologist why my dad did not recieve a Neupogen shot to raise his WBC, why a delay in his chemo treatment. The oncologist told my mother that he did not know that my dad did not recieve the booster shot and that it could be given the same day that chemo was to be given. Needless to say my dad was called in and given Neupogen, several boosters of it now and his chemo was started again. The name of the WBC booster is Neupogen and it can be given at the same time chemo is given, the same day!>>> I mention this because sometimes the doctor's are not in the chemo treatment room and if your doctor allows for you to have a WBC booster shot if your count is too low, and he/she is not there to make sure that it is given, your treatment could also be put off like what happened in my dad's case. There is also a RBC booster.... :!: So do not confuse the two. There is one for both WBC's and RBC's. Here is a website about chemo that I have found to be very easy to understand and very helpful. In this site, and if you go into the bone marrow section there is an explaination for the RBC booster. Again, if you do not know that Neupogen exists, ask your doctor about it so that if the case should arise where your WBC's are too low and a chemo nurse tells you that you cannot have your chemo because of it, you will know that your doctor has allowed for you the Neupogen and chemo on the same day. I would have the oncologist mark it as okay (in your chart) to go ahead and start chemo with the booster. Ask your doctor about it... :o

http://www.cancerhelp.org.uk/help/default.asp?page=310

Chani

Link to comment
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Restore formatting

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

×
×
  • Create New...

Important Information

By using this site, you agree to our Terms of Use.