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Feeling Alone

anag21's picture
anag21
Posts: 28
Joined: Sep 2011

I am pretty new to this site and so far it has been such a great resource for me. It is something I really needed to help me through this process, especially mentally. Although I don't post a whole lot, what I have read has been immensely helpful.

I am 20 years old and was recently diagnosed with extranodal natural killer cell lymphoma. From what the oncologist has told me and what I have been able to research this is a pretty rare condition, typically only happening in middle aged men in East Asia and South and Central America. Also the typical presentation is in the nose while mine showed up in my pancreas. Rare on top of rare.

Unfortunately there isn't a ton of info on how to treat this disease as it is rare and fairly new. Only one regiment from clinical trials really exists, called the SMILE treatment. It consists of 4 days in the hospital where they administer (excuse my spelling), methotrexate, ifosphamide, etoposide and a steroid. Then I get 3 days off with a neulasta shot before starting two weeks of l-asperiginase every other day.

Because of the rarity of my condition, I am feeling really alone when I see the message boards where people can compare their diagnosis or their treatment and get support in that way. I feel like I am unable to get that support since no one seems to have what I have, or even use any of the same chemotherapies. I take what I can get as far as certain experiences with friends and family or emotional issues, but when it comes to talking to someone and comparing stories, I feel so left out. I appreciate the support I get but I just feel like there is a piece missing.

Sorry for such a long post but I really appreciate any thoughts and prayers.

Thanks,
Ana

jimwins's picture
jimwins
Posts: 2111
Joined: Aug 2011

Hi Ana,

So sorry you have to be here but you will find a wealth of support at this site.
I've only been involved here myself for a short while and have found it
very helpful.

I did a little research myself and pretty much came up with the same results
as you. I would offer caution about researching on the internet.
Though a wonderful tool, you find outdated information/statistics that
can scare the heck out of you so take it with a grain of salt. If you find
the "research" is getting you down, stop and take a break from it!

Cancer is different with each individual and I can't tell you how many
nurses and doctors have told me how important attitude is. You are young
and that is a big big plus.

Some questions I might ask:

1. Are you being treated by a good, reputable facility?
2. Did you get a second opinion to confirm diagnosis/treatment, etc?
(especially since this is a rare type of lymphoma in the states).

You will find wonderful and caring people on this site, most with a lot more
experience than I have. I hope some will have the experience/knowledge
you are looking for. Regardless, you will find this a good site for support and understanding.

I wish you well. and sending you a big hug...

Jim

anag21's picture
anag21
Posts: 28
Joined: Sep 2011

I am at Texas Oncology, not sure how reputable they are but I have a really really good oncologist that cares for me wonderfully and I am very lucky to have him as it was sort of just by luck that I got to him. I didn't personally get a second opinion but my oncologist sent everything about me and my condition to Dell Children's Hospital and also to Stanford where I understand they know a lot about lymphoma. Both sources came to the same conclusion so I am satisfied with the diagnosis. It is just really scary to be going through a treatment that has only been used for about three years. I have started having allergic reactions to one of the chemos so they have have to change things up a little which absolutely terrifies me. I definitely do not want to be an experiment!

Thank you for your well wishes =]
Ana

jimwins's picture
jimwins
Posts: 2111
Joined: Aug 2011

Hi Ana,

I wasn't meaning to "grill you" with the questions :).

I just wanted to make sure you're in good hands and it
looks like you are and I'm glad. I read your postings on the
"location" discussion topic and learned a bit more.

You are young, smart, tough spirited, have a good attitude and a
good support system in place - all strong positives in this battle.

Great news that you are responding well to treatment despite the
allergy setback to l-asperiginase. I hope they'll get that
worked out for you.

By the way, I lived in Houston for 20 years - I really miss
the Tex-Mex and Mexican food. You just don't find that
down here in "Nawth Carolina" ;).

Just wanted you to know you're in my thoughts.

Everyone here is behind you all the way!

Jim

anag21's picture
anag21
Posts: 28
Joined: Sep 2011

Jim,
Thank you so much! And I didn't feel grilled at all, no worries! Also, I cannot imagine being without the Tex-Mex and Mexican food, it's my favorite! I haven't been able to eat it as much because my gastrointestinal system is going all haywire at the moment but that is for sure the first thing I am eating once that clears up!

Thanks again,
Ana

violinist1
Posts: 33
Joined: Aug 2011

Hello Ana,
You are not alone! I know you are there! A cancer diagnosis by itself makes you feel like you are different, and you are veryyoung to experience such a dramatic life lesson. I hope that you have good support at home. I agree that it woukd be best to get a second opinion, even in the middle of treatment if necessary. It is expected, so don't feel embarrassed asking for it. Do you live anywhere near a big city? Doctors expect you to go after a second opinion, and yes, it requires some effort on everyone's part, but is is far more common than not. No matter what, don't let anyone tell you to put on a happy face, and to act positive just for the sake of good attitude. I agree that that there are times to gather yourself up and try to be strong, but it is for your sake and your health only, not forother people'feelings. It is easy to imagine you trying to make this easier for your family as i imagine they are pretty perplexed. It is all too fast for you to have yourself together yet. It wil take some time, and i believe that you will do it. I hope that you take the treatment as well as possible, and that you can find a new normal, with a lot of support from your family. It is normal to be upset and worried!!!! It is ok to feel that you are different. Cancer patients ARE different. You have to get treated while your friends don't. It is a fact that you are different in that way. However, you are the same person as before, and you will prevail, we all want you to here on this site, and everyone here will hold you in our hearts, thinking good thoughts for you to get through this brand new and bewildering process known as cancer treatment.

anag21's picture
anag21
Posts: 28
Joined: Sep 2011

I have great support at home with my family, friends, and wonderful boyfriend and that has helped me out tremendously. I haven't personally gotten a second opinion but my oncologist sent all my results to Dell Children's Hospital and to Stanford and they all came to the same conclusion so I am satisfied with the diagnosis.

Thank you so much for your thoughts!
Ana

COBRA666's picture
COBRA666
Posts: 2413
Joined: May 2010

Ana,
Believe me we all know exactly how you feel about feeling alone. Most of us do have others we can compare notes too. Even so we still have that lonely feeling within us. Please take the advice of Jim and try to stay away from those websites. They will scare you out of your wits at times. They are statistics only and usually outdated. We are not stats,we are individual people. You have found a wonderful site here.John(NHFL-1-4A-5/10)

anag21's picture
anag21
Posts: 28
Joined: Sep 2011

Haha yeah one look into the websites and I stopped because all it did was make me worry about things that I cannot fix and have no control over. I absolutely love this site so far and I thank you all for all the great advice. My only wish is to find someone who has the same thing I do so I can figure out what is normal as far as treatment and side effects go and what isn't. Unfortunately that is highly unlikely to happen so I will continue to take this site and its wonderful people for everything I can get. I will beat this thing!

Thanks,
Ana

Go_go_Gi_gi
Posts: 84
Joined: Aug 2011

Hi Ana-

Your courage is amazing--glad you have a great support group---I'll be praying for you; especially that the chemo allergic/side effect reactions will subside. I'm just beginning to hit the alone, emotional up and down wall-- Thanks for sharing all of your thoughts, worries, hopes---things it seems we all struggle with--
I've been stoic all my life, independent and healthy--I don't like, I hate cancer---and the reality of having it--yet, I have so much to be thankful for and I'm trying to live one day at a time, enjoying what I can Susan

anag21's picture
anag21
Posts: 28
Joined: Sep 2011

Thanks Susan,
I definitely have been trying to do a lot of enjoying the little things. It kills me to lose so much of my independence and not be able to attend school where I was a collegiate athlete. However, I have been enjoying absolutely everything I can-a nice walk outside or just a really good day with friends-and just telling myself that I will beat this thing and be back to studying, procrastinating and practicing in no time!

Ana

jimwins's picture
jimwins
Posts: 2111
Joined: Aug 2011

Don't forget the Tex-Mex ;)!

Gosh, my mouth is watering thinking about it.
Grits get old and "fried everything" down here :).

Hugs

anliperez915's picture
anliperez915
Posts: 772
Joined: Sep 2011

Hello Ana;
This is gonna be my very first post...I'm very new to all of this, sorry that your going through all that stuff alone since you have no info to compare it to...I was just diagnosed in Aug. 23, and I still don't know what type of NHL, so trust me I feel alone too...Cancer has taken most of my Aunts and Uncles so I'm kind of freaking out right now!!! Don't loose hope and stay strong you are in my prayers!

:)

Lizeth

bluerose's picture
bluerose
Posts: 1112
Joined: Jul 2009

I can imagin how it feels to be told you have an extremely rare cancer, it would make anyone feel even more alone than a diagnosis of a cancer that is much more widely seen - for support and information I mean.

When I was reading your post one thing popped out at me so thought I would share. I knew a family from my church years ago and their children, one by one, were coming down with a very rare form of muscular dystrophy (sp) that most doctors had never seen before. They were told there can't be more than 2 or 3 other cases world wide. They felt as you do, so alone. I did some volunteer work for this family as the Mum kept all 3 kids with this at home so her home was more like a hospital than a home as all were bedridden at one point. We had a whole team of volunteers who helped this family.

Anywho I remember one day I came to help them and the oldest teen, first to come down with the illness, was all smiles and said that she was online and looked for someone else who had the cancer and found someone in England. Information was shared and new things were tried and today the illness is bascially gone and she is leading a normal life, even has had children. Her siblings - same thing.

I agree you should be carefull of where you look online for information but there are some good sites, including this one first of course. One of the sites I would really suggest you try joining up with is called ACOR. I think it stands for American Cancer Online Resources. I know that they do a ton of research on all kinds of cancers and issues with cancer. Have a look at the site and ask your questions under their boards too, under the appropriate cancer groups. They work a little differently than this site does but you will catch on. I think they are totally worth looking into for more reputable info on your type of cancer plus you might find some others with the same sort as you.

Another good site is one here in Canada that is run out of our biggest cancer hospital in Toronto. The site is called Caring Voices. You can join up and post a question on the main page and someone will respond. Also on this site you can attend online meetings with professionals from the hospital. Anyone from any country can attend. Go to the Caring Voices website and join up and you will see the calendar of meeting topics then attend them and ask the professional your questions. If they don't know they will possibly find out for you and either email you back the answers or post them. It's worth a shot.

I do hope that things will go well for you in your quest to beat this thing. I am a 25 year survivor of non hodgins lymphoma, I am sure you can beat yours too.

Blessings,

Bluerose

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