Story like everyone else...

effcancer · Regular Joined: 21 Apr 2007 Posts: 22

wow, what a story.

I found out yesterday that the pathology came back from my CT/PET scan, and I am Stage II. Which is good, cause its not stage III or IV, but I was hoping for stage I.

Today I had my bone marrow biopsy. I was awake, but had taken an Ativan (Lorazepam). It helped to calm me down, but I still was in a lot of pain.

Who ever says it doesn't hurt as bad as you think.... they are all liars! haha

I've fractured my ulna, broken 3 toes, and smashed my finger in my apartment door.... this hurt worse.

Tomorrow I go back to my Oncologist to get the game plan for the future. Although we won't know the results of the bone marrow biopsy until next Friday.

I graduate in 17 days! I'm so excited to be done.

no word yet on whether I'll have hair for graduation. Wink

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So, this sucks.

Boldelly · Posted: Fri May 04, 2007 8:47 am Post subject: Re: Story like everyone else...

Well that is good news that it is only stage II you will probably do some chemo and radiation. Chemo is the harder of the two. My daugher got sick on the first round but I really think anxiety played a role in that. Second round she sick but did not throw up as many times the second time. The third and fourth she did not get sick (throw up) at all. She got to where she had bad anxiety each time before she went into the hospital so they put her on Valum a few days before she went into the hospital. Her chemo was every 21 days. She would go into the hospital for the first dose and stay the night and then get the second dose and then she would go home and for the third and four dose she would go as an out patient. Everyones chemo is different I think. I am glad she had about a week of feeling better before she had to go back for another round. She started out really strong but by the last round of chemo she would cry and tell me she did not want to do it anymore. But we made it through and so will you. When do you start chemo? Randi's (my daughter) hair began to fall out about 2 weeks after her first round of chemo but she kept it pulled up on her head in a bun like and so it was not until the second round that she finally had to go and have it shaved off. She did pretty good with that but our hair dresser cried as she shaved Randi's head. Once she shaved her head she did pretty good with it after that except not wanting anyone to see her without the wig or her hat. You don't have long before you graduate so hopefully you will still have your hair for graduation. I know cancer is hard for an adult but it has to really suck big time for a teenager. Randi's friends were really supportive of her and we had lots of family as well. They will do the PET, CT, bone scan, and Gallium as well as the bone marrow aspiration again when we retest to see if all cancer is gone. She hates the Gallium scan because they make her drink this really nasty stuff tastes like salt and the first time she did it in the hospital she would drink the stuff then throw up and they would make her drink it again and she would throw up this happened three times before she was ever "clean" enough to do the test. It was horrible for her. I will be glad when this is all over as you will be too I am sure. After the chemo her veins were just not good and they were hard. When she had to have the CT done they had to inject a dye which they cannot inject dye into the port in her chest so they had to poke her and she told the guy that he had one try and if he did not get it he was not going to. She is not a child that really speaks out for herself much of the time but I am telling you this experience has taught her too. She definately speaks up for herself now, ha ha. If they have to do the bone marrow aspiration again on you ask if they can put you in a deep sleep for it and maybe they will. You are old enough to help make decisions about your care and treatment at least they let Randi because she is 16 and it gives her some control back over her body.

I am not trying to scare you or anything but I know it would have helped Randi tremendously if she knew someone who had gone through it and could have told her what to expect. I think the doctors do the best they can but until you have it done to your body you wont know how it will effect you. You may not have any problems as far as being sick because I have heard that some people do not get physically sick but just feel naueated. I have heard that some people do not even loose their hair, but that one of the first questions that came out of Randi's mouth when they told us she did have Hodgkins was "will I loose my hair" and he told her she would.

Stay strong and know that it is not forever you will and you can get through this because you are a strong young lady and you will be a survivor just like I know in my heart Randi is going too.

Please keep us informed as to how you are doing. Randi did not have anyone on the oncology floor her age so she was not able to bond with anyone her age who was going through the same thing. There are web sites for teen though and I am sure they will give you some if not let me know and I will send you some they gave Randi.

Well God bless and you will be in our prayers. Let us know how things go for you.

Laurie

effcancer · Regular Joined: 21 Apr 2007 Posts: 22

I have now had 3 different opinions.
The first oncologist said to do 2mos of chemo and 6 weeks of radiation.
The next said 6mos of chemo and no radiation.
The third said 4mos of chemo and then radiation.... but length depends on my progress.

SOOO
I'm going with the 3rd opinion. He is the most qualified of the three. (Dr. Michael Lill at Sedars Cinai in Los Angeles.)

I had my first ABVD treatment this past tuesday and it wasn't as bad as I thought. The only part that sucked was (I think) the bleomycin (sp?) because it burned, so they had to do a really slow drip with saline to ease the pain.

I go in for a hair cut tomorrow. I decided the hair loss would be easier to deal with if I had shorter hair. I've picked out a few cute styles, so we'll see what my stylist does. I'm up for anything at this point.

Just wanted to give everyone an update.

Oh! And I graduated. So glad to have a degree.
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So, this sucks.

jfkbluecircle · Posted: Mon Jun 04, 2007 9:33 pm Post subject: Re: Story like everyone else...

Hi, Effcancer,
Congratulations on your degree!

It sounds like you received rather differing opinions about the course of your tx. I was stage IIIB, had 6 months ABVD, and no radiation (predicted correctly by my hema/onc doc) since the primary sites (mediastinal mass: 13 1/2 cm, and spleen: 7cm) were clean after the six months--I celebrated ten years' remission this year. The bleo is a PIA; but I always found the DTIC the worst since it was the last one they administered and it seemed like it took forever.

I got my hair cut short, too, early in my diagnosis/treatment. It really helped me with the hair loss aspect of recovery.

It was great to read how you are doing. Keep up the good work and please keep us all posted.
Best,
Jessica

kimlk · Regular Joined: 06 Feb 2007 Posts: 11

Hey there & congratulations on your graduation. Hopefully your treatments go well. I had ABVD as well, but for stage IIIB HL. I ended up with 8 cycles which worked out well for me because everything cleared up and I've been in remission now for 17mths. I agree on the bleomycin, I had some troubles with that too & popsicles or freezies are great for masking the taste of the adriamycin. My oncologist didn't recommend I get the radiation, he said that chemo was just as effective & that some of the possible long term side effects of radiation are not the best, but I'm sure that all of your doctors gave you the best options available.

I cut my hair before treatment & dyed it too, it was down past my shoulders at the time. I figured why not try something new and radical if I was just going to have it all fall out anyways.

Well, I just wanted to wish you the best of luck with your treatments & say that I'm glad that you found the forum. I wish I had known about it before everything started with my own struggle. It's nice knowing there are others out there going through similar things.

kman543210 · New User Joined: 27 Jun 2007 Posts: 5 Location: Oregon

effcancer and abster32, how have your treatments been going and how are you guys doing? I'm new to this forum, so I'm just going through old posts. I had lymphoblastic lymphoma, radiation, 18 months chemo when I was younger. I was supposed to be awake when they did the bone marrow, but I must have dosed off. They did the bone marrow and put in my catheter at the same time. I just remember waking up in the middle of it and having an oxygen mask over me; I panicked on the operating table and couldn't breath. I remember it huring afterwards, but I don't remember much about the procedure itself. The chest tube they put in before I was diagnosed was the worst thing ever done to me medically though.

Man have chemo treatments changed over the last decade since I went through it. Sucks no matter how long you have to do it. I was a 14 y/o boy and was very concerned about losing my hair too, even more concerned about that than dying at the time (I know seems stupid now). I hope all is going well.

Kevin
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Lymphoblastic Lymphoma

effcancer · Regular Joined: 21 Apr 2007 Posts: 22

I had my PET/CT scan last week that confirmed that I am officially cancer free! So, I still have 2 more mos. of chemo left and then radiation.. But, I'm cancer free!!! Smile

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So, this sucks.

brainman · Posted: Mon Jul 30, 2007 6:46 pm Post subject: Re: Story like everyone else...

Effcancer, I have read your post and been praying for you although this is my first reply. I just want to celebrate with you! It is great to hear that you are cancer free and only have 2 more months of chemo!!! How are you tolerating the chemo? Hope all else is going well with you. I continue to keep you in my thoughts and prayers.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

effcancer · Regular Joined: 21 Apr 2007 Posts: 22

Thanks for the prayers! I'm handling chemo pretty okay. I haven't lost all my hair though its getting pretty thin, and I haven't had any mouth sores or anything like that... I just get really tired. We shall see how the next two months go...
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So, this sucks.

brainman · Posted: Tue Jul 31, 2007 7:55 am Post subject: Re: Story like everyone else...

I say "only 2 months of chemo" like that is nothing Sad

while I know how hard even one more treatment can be so difficult to face. While I have never had the form of cancer you have, my 13 months of chemotherapy were pure hell on earth!! I was hospitalized twice during that time due to complications and had to terminate treatment early due to pneumonia secondary to low white blood cells due to the chemo. The next year when I turned 40, my friends were joking about me being "over the hill." I replied: "I don't mind so much being 40. I just feel like someone owes me a year because last year was a total loss." Now, almost 15 years later, I see that I had to give up one year in order to continue to live. I wish you continued improvement and a long survival.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

effcancer · Regular Joined: 21 Apr 2007 Posts: 22

I think thats a bit how I'm feeling. Kind of like I'm in this purgatory. I'm done with school, but I'm not working yet... which is something I'm really looking forward to. I'm constantly on Monster.com and yahoojobs looking for Public Relations jobs in LA. I hate that I can't apply for one. I feel like they're posting my job and that someone else is going to get it... which is not a fun feeling.

In other news, my arms are killing me. My left one is is all bruised from where they injected me with the stuff from the PET/CT scan, and the right one is sore from a woman that tried to draw blood and didn't know how and collapsed a vein in my right arm. So on Friday they had to do chemo through my wrist. I don't reccomend it. owww.
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So, this sucks.

jfkbluecircle · Posted: Wed Aug 01, 2007 10:50 am Post subject: Re: Story like everyone else...

Hi, effcancer:
I am so happy for you that you are nearing the end of your chemo. Before you know it, you'll have that job you've been looking for and waiting for all this time.

During my treatment, my veins shrank away from the surface of my skin (seeming to reflect my desire to run away from tx) and nurses had a heck of a time finding 'good' veins for draws and ivs. The usually apparent ones on the inside of my elbows suddenly disappeared and the nurses had to find others down my forearm, etc. to stick me. I got hooked up on the back of my right hand after a vein burst during the administration of the DTIC one tx. To this day, ten years later, I still have a shadow of that mark on my left forearm (I am terribly white).

You have the best attitude and I am sure those following your story who are enduring their own processes of recovery are finding great comfort and inspiration from you; keep us posted on how things continue to go.

Keep up the good work Smile

!
Best,
Jessica

Linda Gavin · Posted: Fri Aug 03, 2007 1:42 am Post subject: Re: Story like everyone else...

You're so brave to get the bone marrow biopsy without sleeping! I was sleeping and it didn't hurt at all.

Don't be depressed. Thanks to this experience -to go through something this though early in life might save you many years of meaningless "have too's". Maybe you'll make more adventurous and less perfect and predictable choices for yourself after you've beaten your cancer. Bad things happens to everybody! But the world doesn't end because we get sick or get in a bad spot. There are still so many fun things to do.

Focus on the good thing about having a curable decease. The word curable sounded like an extra life to me.

Hugs,
Linda
_________________
Non-Hogkins Lymphoma
1st cycle of chemo
30 year old Swedish girl living in Berlin, Germany

effcancer · Regular Joined: 21 Apr 2007 Posts: 22

So, Monday night I felt another lump on my neck...

I already had an appnt with my radiation oncologist set up to get me tattooed and ready for starting radiation...
I told him about the lump, he felt it and got worried. He called my regular oncologist and they have set up a needle biopsy for me next week (it was the soonest they had) If it comes back negative, they won't trust it because it is such a small sample, and then I'll have the regular surgery biopsy like I did last time. I am also set up for a PET C/T scan for next week, though it might not show up on there because it might be too small.
Anyway, I'm really upset. I was almost done. I was only going to have 3.5 weeks of radiation, and then I was going to be able to get on with my life. Now.... I'll probably get more chemo... and I don't have any good veins left.... which means I'll have to get a port put in my chest which I'm really not happy about. One more scar.
yuck.

All in all, I just really want it to all come back negative... but I knew the first time it was cancer when my doctor told me it wasn't... and I know this time. I'm trying to stay positive, but it feels exactly the same as the first ones I had.

Not a happy camper.

By the way, I know myspace is lame... but if you wanna see some funny pictures through my cancer journey, check them out in my pictures at: www.myspace.com/karadavis
might be nice to put a face to a story...

Anyway, that's it from me. pissed.
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So, this sucks.

effcancer · Regular Joined: 21 Apr 2007 Posts: 22

So, Obviously it came back positive. That was a while ago. slowly trudging onward...

I have a website updating people now.

http://web.mac.com/karasdavis/Site/Welcome.html
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So, this sucks.

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