72 replies to this topic

[Jamie2015]

Hello Risen,

 

Sorry to have to 'meet' you this way, but glad you found this forum:)  I to am a young adult (22) and finding out I had CML was a total SHOCKER to say the least.  I have been on Syprcel 100 MG and headaches/tooth pain and a few other fun things aside..i'd like to consider myself pretty lucky.  When going to the doctor I meet people who no longer have hair, who can hardly walk due to fatigue...and as I sit there with my headache.  I cant help but think, while this isnt something I would wish on my enemy...God could have given me a much greater battle.  I will take the headache and my one pill a day with a smile on face as I keep moving forward.  One day at a time my friend.    They will find the cure.  I have hope.

 

Well wishes to you our newest blood buddy.

[Risen]

Again, I appreciate the comments from everyone. And apologize for the late reply. I had to just keep my mind off things for a bit.

Things have pretty much gone back to normal in my life. I'm feeling, atleast mentally stable for the time being.

 

I just had my appointment with my Oncologist, Dr. Sehgal, in Pittsburgh yesterday. She seems to be good at what she does. she agreed that the 4000mg a day was alot, and dropped me back down to 2000mg a day. I forget the Doctors name that prescribed it so high. But I just had another bloodtest yesterday and my WBC is down, but I forget what it's at. Dr Sehgal said she's going to start me on Gleevec once it lowers a bit more. We go on the 3rd for my BMB to see where it's at, I'm a little bit nervous about it but from what I hear from you guys, and the Doctor, it's not the worst thing in the world. I think I'm more nervous of it being anything other than chronic phase though.

[Billie Murawski]

Hi Risen,

  You are doing fantastic, it's a good idea to step away for awhile. Don't let cml rule you. Just learn as much as you want to about it,and the meds. Once you get adjusted you will feel much better, this waiting is awful. The bmb is not pleasant mine was typical I guess compared to what some others go through. You can request sedation talk to your mom about it. Take care Billie

[Gail's]

Risen, the BMB was not as bad as I thought it might be. I was given Ativan, a drug that helps you relax, then injections of lidocaine to numb the area. I came armed with stupid jokes that I told my adult son, who was present during the procedure. Take a friend or family member for support. You'll need a driver if you use Ativan or a prescription pain reliever before the procedure. After, I had mild pain and swelling. I used ibuprofen and ice packs for the area for about 24 hours then it improved enough I didn't need anything more.

The things that have helped me at this site are information I can understand, experiences of others, and the bizarre sense of humor shared here. You're at a good place so come back often! Take care!

[Antilogical]

I have had 2 BMBs.  They only last for ~15 minutes, so if there is any discomfort, you know it won't last too long.

 

I've only had the local numbing.  The first was laying on my side, & the second was laying prone on my stomach.  The prone position was definitely more comfortable for me, & I think it was easier for the doctor, as well.

[Trey]

For the BMB take your musical device and turn it up.  Thinking about it is far worse than the actual procedure.  And if they use twilight sedation you won't know what song is playing anyway.  You could probably even play some Lady Gaga and not even know it.  Just sayin'

[Risen]

Can't wait, lol.

I'm still on the Hydrea, is spleen piain normal? It's nothing excruciating, but just a sharp pain once in awhile? It's usually if I stretch or put my left arm behing my head.

[hannibellemo]

Risen,

 

Just wanted you to know that my WBC was 348,000 at diagnosis (dx). We're very competitive on this site! I also took Hydroxyurea, but as Trey said its useage is debatable since our medicine (TKI) lowers the WBCs just as well. If you are taking that they should probably have you on Allpurinol, too. That lowers your risk of gout caused by all the quickly dying WBCs. It's probably a more intricate process then that but close enough.

 

You sound like a smart young man so try and learn as much as you can about your disease since you will be living with it for a long, long time.

 

About guitar and hand cramps. I started on Gleevec and never did have hand cramps, mine situated lower in the body in my feet and legs. I learned quickly never to stretch in the morning! Sorry, don't play just like to listen!

 

Take care and keep coming back here with your questions, concerns, whines and bitches. We're always here to listen and make fun of you if necessary! (Just kidding about making fun - sort of).

 

There are also forums on facebook and elsewhere for teenagers and younger adults with CML, but for straight up information it's tough to beat this site. Definitely get your mom involved on here so she can quit bugging you. She loves you - just remember that!  

[rcase13]

Yep very normal. I still have spleen discomfort 5 months later. Mine was particularly bad. The poor thing pretty much filled up my chest cavity and parts had died.

It is funny I asked the same question you just did about five months ago.

Hopefully they get you off Hydrea and on to a TKI soon.

[Risen]

rcase13, my mother just walked into my room as I was reading your post. She said the nurse just called and I was approved for Gleevec, but I'm not sure when I start on it, thanks for letting me know about the spleen too, I had a weird feeling after I made the post, it felt like it was twitching or bubbles were popping in it, it was pretty unsettling but it didn't last long.

 

hannibellemo, at 348k were you still in Chronic phase? It may not mean anything but they won't do my BMB until the 3rd to figure out what stage it's at, and I'm kinda worried about it not being in Chronic. Thanks though for all of the info, and the compliment. Lol. And yea they put me on Allpurinol too. I sent my friend a message and picture on Facebook with all of my pills, my pill organizer, my laxatives and my hemorrhoid cream and said "I am literally a 65 year old man."  which we both got a pretty good laugh out of.

 

I'm very thankful for this forum, and it's helped me get through a really tough time seeing you guys converse just like on any other Forum I've been on, and you all seem happy and content which is very relieving for me and my mom.

 

I had another question though, do any of you get flashing in your eyes when you stand up? Kinda like when you stand up really fast, but it happens even when I get up slow? And it'll happen randomly just sitting on the couch or here in my computer chair.

[Lucas]

Hey, risen, try not to worry much. the wbc number is not that relevant. blasts and basophils are more important to define the phase. i had 258K but 3% blasts and 8% basophils (chronic phase). the spleen will be back to normal in a couple of months. mine was huge, bellow my belly button and it became normal in a month and a half. good luck.

[rcase13]

I have flashes of light around the edges of my vision. Went to the Retina specialist and basically they didn't see anything that could cause it and blamed the TKI.

[rcase13]

Lucas what does the Blast and Basophils have to be to be considered Accelerated/Blast?

[Lucas]

hi, rcase, hope everything's ok with you. there are many classifications of accelarated phase, the most famous is the World Health Organization (WHO) that says that 10% blast and 20% basophils means accelerated. I read a doctor Druker's text and he said 5% blasts are considered accelerated. Most of cml doctors will say that those classifications are too hard and there are a lot of others signs of accelerated phase that you should consider and that it's not so simple like WHO said. 

[rcase13]

I must have been borderline. I was 268 WBC 6% blast and 12% Basophils.

[Lucas]

what really matters is the response and yours is great

[Risen]

I woke up today feeling terrible. I dunno if I'm getting sick or what. I went back to bed around noon, I just woke up at about 4.

I feel really hot, achey, and weak, with a side of stomach pain. Anybody know what I should take?

 

I'm still on the Hydrea, so I don't know if it's related to that, they said my Gleevec was approved, now they're saying we're going to have to pay $2000 for some reason.

 

I'm honestly getting worried.

[hannibellemo]

Hi, risen, I was definitely in CP and there have been people on here with much higher counts than mine who were also in CP. My spleen was quite large but it went back to normal size very quickly after starting Gleevec.

 

Loved the bit about being a 65 year old man!

 

Good luck!

[rcase13]

I'm still on the Hydrea, so I don't know if it's related to that, they said my Gleevec was approved, now they're saying we're going to have to pay $2000 for some reason.

I'm honestly getting worried.

Risen get your doctor or case worker to help you apply for a Novartis prescription assistance card. It will cover what your insurance doesn't. Things are going to get better real quick. Just hang in by there. The side effects will get better and soon you will be back to a normal life. Well almost normal... Sharts and other fun things await you! Best of luck!

[Antilogical]

Risen - Does your onc have a "Nurse Navigator"?  Many medical centers do, and if you have one - call.  That's what they're there for.  If you don't have that sort of setup - call your doctor.  Remember - you're the customer!