71 replies to this topic

[jrsboo]

Dear Super,

Glad to hear that you are starting on the drugs, and other than some pain and fatigue, sounds like it is doing ok.

I almost ALWAYS ask for wheelchair assistance.  We travel quite a bit.  Why expend the energy on getting through the airport and security, when since energy is limited, you can use the energy for something more constructive.  Let them push you around the airport, you won't have to worry about not being able to walk all the way down to the gate and with security, it puts you AND your family on the short line, way less stress.  I get up and walk through the detectors, but then right back into my wheel chair I go.

I traveled to Vegas about 1 month after starting Sprycel.  There is no way I could have made the trip without a wheel chair.  We borrowed one from the hotel and took it everywhere we went, just in case I ran out of energy in the middle of something.  Cause when I ran out.  I ran out. 

But I never let the CML or the drugs stop me from getting out in the world and trying to enjoy it as hard as I could!  Things were just slower, or seen from the inside of a rental car (like going around the Red Rock Canyon instead of hiking).

I take Ibuprofen with no problem.  But I also have backup drugs of diluadid and morphine for when serious pain hits.  I also travel with a ton of supporting drugs, special powders and creams for the skin infections I get constantly, just put everything in its original prescription bottle and put them all in a giant zippy bag to show security.  They will let you take all the drug gels and creams you need with no questions. 

Let us know how you are doing!!  And enjoy as much as you can.

Caroline

[tiouki]

Hello Vicky,

I have just seen your message, sorry to see that you also have our disease.

As other said, you have been very recently diagnosed, things will get much better I am sure.

In my case (22year old, diagnosed 9 months ago), the first weeks were the hardest. It's a big shock, plus you usually have more side effetcs/issues/hospital apointments etc...

The good thing is : as time goes it only gets better
Right now I almost don't think of my disease and live a perfectly normal life. The only thing is an appointment evry 3 (soon 6) months, plus a pill each that I take without thinking of it and which does not give me any side effects.

I don't want to minimize our disease, at all, but with newer treatments our disease is really different than other typical cancers, and the survival rate also has nothing similar. It really is a chronic disease, which is annoying, but I'd rather have CML than diabetis or something like this.

However, you really have to do something with the anxiety/depression thing that you are going through. I really hope you will get better soon, and I'm sure that the disease will get more and more in the background of your life

Good luck

Pierre

[annsher88]

Dear Super, I'm so sorry to hear about this diagnosis, I can imagine you are feeling pretty scared. There is tons of information that I'm sure you are just starting to gather, I hope you find information on sprycel like Caroline mentioned and that you continue to use the LLS forums to get community and support.

love, annie

Message was edited by: Abena

[reedmary3]

Hi Super,

Check out .com, which I noticed Annie mentioned earlier before it was deleted by a site admin. It is a wonderful tool for asking questions that you are having with your recent diagnosis. 

There's lots of press onanyway, and it's going to revolutionize mobile health technology.

love and healing!

Message was edited by: Abena, due to promoting a product/website. You may not post on the general boards any advertisements.

[Trey]

Annie and Mary,

Go away.  I am glad to see that the LLS admin folks have seen through your veiled attempts to spam us with garbage advertising while trying to sound sympathetic.  The LLS folks have left the remnant of your attempt after deleting your advertising, but it is still garbage.  Go away.

[pammartin]

What Trey said.......

[cam_kris]

H

I too have been just diganosed March 26th 2012.  I have wrote on other sites i guess with no responses, I am on here to understand and follow other people that have CML.   I hope I am on the correct page now.

I do not know how to get friends or anything so your help would be greatly appreciated,

this is a very scary Disease,  I was hit in the face upon being told this, it has changed my entire life.  I am a 54 year old women, that wants to live,I have great family support but I want to live and live with out being scared all the time.  after reading some of your

posts, i am so happy to find this site,  just about all i have read, I am or have gone through some the same things.  Everytime I get a black and blue mark or have a side ache or back ache, the first thing i think of is

i have cancer in my back, or cancer in my liver and the list goes on.  I know I am playing mind games with myself and trying to work through that, hopefully in time this too will pass.

I hope to find friends on here to make my journey better to understand and share things that we are going to be faced with in the future. 

Thank you as for I am

Scared in North Dakota

Kris

[Susan61]

Hi Kris:  I just answered your first posting, and you just answered some of the questions I asked.  Yes, to everything you have said.  You will make some great friends on here.  Besides learning a lot, we even have a lot ot laugh about at times.  You can Live With This Disease, and that is the good news.  I was diagnosed in 1998, and we have people even longer than me who have been surviving CML.  Its all so new to you yet, and it can be overwhelming at first. 

I hope some of this helps you.  I am always around if you need somebody.

Susan

[super99]

Hi everyone,

I am sorry for my late response. For some reasons, I didn't see the responses posted in my email until today.  Also, I was miserable on the first day of Sprycel - headaches, fever, very tired, and terrible lower back pain. I couldn't even stand or sit and had to lay down. But yesterday and today are much better. Only headaches, which I don't know it is related to Texas heat or the sunlight.  I've taken Sprycel around night time 11 or 12 p.m. and have noticed I toss and turn and don't have a deep sleep. I also wake up earlier than normal with a weird feeling in my stomach and on my teeth. These symptoms go away later in the day, though.

Melanie, I told the onc. about the length of the trip and he is okay with it. He hasn't said anything about lab work after taking the drugs but I will see him next Tuesday. He will go over everything with me.  I can go get a lab work from the hospital where I'll be going, if needed. Thank you, Melanie, for your praying for me.

Susan,  I took Ibuprofen yesterday and had nausea. But I don't really know for sure that Ibuprofen caused it. I will ask the doctor for backup pain reliever meds.  I also think I'm sensitive to sunlight, too, and got sun protective jacket and hat.  I don't want CML or Sprycel to stop me from living my life, either, I just have to slow down a little bit like you said and do what I can and let go of what I can't. 

Trey, thank you so much for dedicating your time and energy on your blog and responses to all of us.

Everyone whom I didn't mention, thank you so much for your support and responses. I know I said thank you many times but I really do appreciate all you do.

From the bottom of my my heart.

Sup

Message was edited by: Super

Message was edited by: Super

[ruineto]

It's overwhelming when you are diagnosed, and anxiety and depression soon follows. But you are lucky today there is a lot of information available and the CML diagnosis isn't a death sentence anymore. I've been on gleevec for the past 9 years and doing great, I rarely post because quite frankly CML is just a little detail in my life right now.

Doctors talk about 5 yrs survival because the tkis are fairly new and there are no long studies. But rest assured the survival is way over that. I think it's realistic to expect well over 30yrs for the ones who are diagnosed in early stages (chronic phase) and achieve major molecular remission. Who know maybe some of us are even cured already, but I don't want to stop medication and find out I am not

Side effects my personal opinion is that many of the listed side effects are due to old age and not medication itself. CML is a disease of the elderly, I am just pretty unlucky and was diagnosed when I was 26 yrs old. I say that because I don't have many of the side effects that many complain.

However fatigue , fluid retention, nausea, and diarrhea are certain for most people , also muscle clamps. For me at least they are very tolerable and I've learned to live with them. I work way more than many of my friends and doing all normal activities just fine.

Also if these drugs can keep us alive for at least 10-30 yrs more I am certain a new curative drug will appear because the CML researches are doing pretty great and in the field of cancer it's one of the greatest advances of medicine in the last years. TKIs itself completely changed an once deadly disease into a chronic manageable disease such as diabetes and hypertension

I hope you find comfort and assurance in these informations. I had a specially rough first year due to depression I even abandoned work and tried to break up with my fiancée, because I was certain I would die (even though I had zero symptoms). A year later when I noticed I wasn't dead , not even sick I restarted my life and I've been married for 7 years now with a 6 month baby girl who is very healthy even though I was still on gleevec

[super99]

Hi ruineto,

I'm sorry for my late response. I was out of the country and just got back to the U.S.

Thank you for writing me. It's very comforting to learn about your journey.  I'm so glad you have a positive thought and have been able to manage CML.  Like everyone else, I was devastated at diagnosis. I felt better after learning more about CML and deciding I will learn to live with this disease no matter how hard it is. Some days I am still emotional and cry. I don't know why but I let it be. Hopefully, I get better and better every day.

Thanks again,

Sup