58 replies to this topic

[Judy2]

Hi Pinkbubbles. I am so sorry that you are going through all this but am glad that you found this site. It has been a life saver for me. Remember, whenever you need to vent we are all here for you. CML is hard to deal with, especially at first, but everyone says that it does get easier in time. I, too, have not had a great response to Gleevec, had side effects that I couldn't tolerate from Tasigna so will be switching to Sprycel soon. I, too, am in the  middle of switching oncs. I know how overwhelming all this is. My step-father passed in Feb., one week later I went into renal failure was dx with an autoimmune disease and 3 months later dx with CML. My mom passed 4 years ago. Even though I am much older than you, 53, I feel I can relate to the depression and anxiety that you are experiencing. Remember, you are on your way to a great hospital, a great doctor and I'm sure they will get you straightened out. Ask them if they can recommend support services in your area. You are not crazy, if you weren't experiencing anxiety and depression with all that you are going through, well that would be abnormal. Anyone would feel the same way you are feeling in your situation and many of us have and are feeling that way. Remember, we are here for you. Let us know how your appointment goes.

Virtual Hugs,

Judy

[Happycat]

Hi, PB,

I'm so glad you found us, because you sound like you need it, you poor thing!  What a difficult time you've had.  I lost my dad when I was young (17), and had to watch him suffer through stomach cancer.  Luckily for him, it was pretty quick, but it was a huge shock for me.  Anyway, I can understand how watching your mom die after taking care of her, then getting dx'd yourself must just have you reeling!  I'm not sure if you mentioned it, but I sure hope you are in some sort of therapy.  It's so hard dealing with all that on your own.

BTW, it's okay to feel you were robbed of your teenage years.  You were.  You've got to acknowledge your feelings before you can deal with them.  I felt guilty for years, because I actually prayed for my dad to die.  I felt guilty wondering if I made those prayers to end his suffering or my own suffering.  Finally, I realized it was perfectly okay to want to end the suffering for both of us.  Took me a long time to get there, though.  Years, in fact.  You've seen and gone through a lot in your young life, and you have much more to heal than just the CML.  My condolences to you, on all scores.  Sometimes life is just unfair, and it stinks that it's that way.

Sorry to get off topic.  Back to the CML.  I'm glad you are getting away from your current onc, because he clearly didn't know what to do for you.  I hope the specialist you are seeing at UofM will be able to get you on the right treatment plan. 

Feel free to come here whenever you need us, to vent, to ask questions, or just to hang out with other CMLers.

Warm (((hugs))) - you'll get through this - and you are NOT alone.

Traci

[Vandyfan]

Pinkbubbles, I,too, am so glad you found this site.  You are about the age of my younger son when he realized he had a life-threatening condition:  alcoholism.   We went through the depths of hell and back.  He is now three years clean and doing very well in terms of school, social life, etc., but he also has to "take a pill each day for the rest of his life."   That pill isn't found in a pharmacy.   It's in an AA meeting.  He goes every day, some days more than once, takes meetings to jails, works with those new in recovery, etc.   It is the one and only thing that keeps him alive.  One slip, one day of letting go, and he would be dead.  Needless to say, he had to change his entire life, move to a different part of the country where we rarely get to see him, lose all his old friends and find new ones, and keep doing it every day.

While addiction may not appear to have anything to do with leukemia, there are some parallels.  His diagnosis changed his entire life.   He went through six hospitalizations, five in-patient addiction centers (to the point we could only find one "last-chance" facility that would take him) and at one point we were told that if he lived through the night he would remain in a coma and we needed to find a nursing home that would take a 21 year old.  At various times he was further diagnosed as bipolar and put on all kinds of medications for mental illness, each time a dead-end in terms of getting him better.

You have the great advantage and strength of your youth.  Rather than mourn over what has happened to you so early in life, which is natural to do, use your youth to your advantage.  One thing that counselors told my son was that the only way he survived was his age; had he been 35 or 40 he would not have survived.  You will get through this, stronger and wiser than your peers.  And we will be here for you.

[Pinkbubbles9642]

Hey ya'll, so I went to my appointment and had the biopsy, ouch, and waiting for results now. I have my appointment on the 6th to get the results and go over "options". He said he didn't want to say to much at this appointment because he's going by records from another doctor he rather get all the information himself and start from scratch. So we did blood and biopsy and stuff. He did mention some stuff about a transplant :-( and I dunno we'll see I guess... But my new oncologist / specialist is amazing I love him and I'm super glad I went to him. I'll let ya'll know what happens!!!!

[Susan61]

Hi:  I just read all the posts from your beginning on here.  I do not know how I missed it, but we have so many new people going through so many things like you.  Sometimes its hard to keep up with the postings.  Your last post here sounded so much more positive, and I am so sorry for all you have been through along with your diagnosis of CML.  You did not say what type of cancer your Mom had, but I can certainly understand how you feel.

    The most important thing is that you are never alone.  You have a lot of Mom's on here that you can talk to anytime just for some love and support.  I am up all hours of the night, and I jump on the computer once in awhile when I cannot sleep.  You can send me a personal message anytime, and I always try to answer as quick as I can.

I have been living with CML since 1998, and the biggest thing is to have the right doctor and right treatment.  I think you will get on track now that you saw a specialist.  Please let us all know how your results come out, and what your next plan of treatment will be.

   Keep in mind that CML has come a long way with treatment.  We have treatment available now that was not here back in the 90's.  When I went on Gleevec thats all I had.  Thank God it worked for me, but so much has been learned in the treatment of this disease.  I am sure you will be fine.  Do something nice to start your New Year, because I think you will see some good changes.

Susan

[JoshLee]

Hey,

    Welcome to the site. I am 27, so a little older than you. I've been on Tasigna for almost a year and so far things are going okay. I know how scary it is to be dx at such a young age and like everyone, all you want to do is live. You'll spend a lot of time waiting with this disease and admittedly, I haven't been very great at being patient. I spend a lot of time "freaking out:" right now....As almost anyone on the board can tell you. I can tell you though, that you must try to enjoy a little part of each day and do your best to hold on to the happy stuff. I hate it when people say stuff like that to me, but it is so true. The numbers are all so confusing, so be happy that you have a great and knowledgeable oncologist that will take care of you and not be confused over things. GOOD LUCK. I really hope they get you on a second generation medicine and it drives your numbers down. Don't think about a transplant until you start seeing some results with the new medicine. I'll be praying for you and let me know if you need anything. My name is Josh Lee and you can find me on facebook or you can pm me if you want to talk on the phone or something. -Josh

[pamsouth]

PinkBubbles,

Regarding "biopsy, ouch"  Just wondering if you had any sedation?  when did you have the biopsy and are you still have pain.  The doctors tell me most people who no trouble and very little discomfort.  However I have had two and was in pain for a long time.  The first biopsy I had an IV didn't feel a thing, but it when the sedation worn off, terrible pain for about a week.  The second one was worst, no sedation and the pain last longer.  Maybe that is because I have a lot of muscular skeleton problems.

Well the 6th is only a week off, so we will be anxiously awaiting to hear how results turned out and your oncologist course of treatment.

Pamsouth

[Pinkbubbles9642]

Hi Susan, thanks for responding! My mother passed away with a lot of cancer per it spread. She was dign. with Sarcoma, and it ended up spreading to her lungs (not lung cancer just tumors on the lungs) and then it went to her bones and she passed. it was a long batter but they gave her a year and she made it 8! she never gave up and did ever clinical trial possible, I hope I have her strength. Also thank you for the comment about a lot of moms on here, I actually feel like there are a lot of moms here to me, I feel comforted a lot by ya'll! I know CML has come along way and everyone keeps saying I'm young and that things might improve in the next 10 years becaue a huge concern for me is about having kids. I want them so bad and now it's like hey guess what you did everything right went to school and college and waited for having the family and now you wont have one. I guess i'm just having a lot of issues with it and i dont know who to turn to, therapist don't help. they stare at me like I'm retarded when I start telling them everything i've been through in my short years. I get "well some people nothing happen to and others like you everything bad happens to them" oh wow thanks very comforting lol. plus I don't know how to talk to even my friends about it without feeling like i'm sounding like "oh pitty me"... I don't want pitty or anything else but I feel like that's what they'll think, cause in reality I might be young but I've been through a lot in my life and I'm very mature for my age where my friends arnt. to be honest with you, and I guess everyone else reading this... alls I want is to be able to tell someone close in my life and just get a huge hug and hear it's going to be ok....

[Pinkbubbles9642]

Hey Josh, thanks for the encouragement and the reach out of support! I try not to freak out all the time and stress with worry about it but I can't help it like it constantly runs through in my mind, I wish you the best of luck as well and hope that the tki continues to work well for you. I wont really know anything until the 6th but when he mentioned the transplant like now I'm like whoa whoa whoa mind going nuts researching things online about it and psyching myself out. 'feel free to reach out to me as well if you ever need someone to talk to! I'm a great listener and have a huge loving heart so willing to be there for anyone! Hope your New year eve is wonderful.

-MJ

[Pinkbubbles9642]

Hi Pamsouth! I've had 3 biopsy's done and none of them have been under sedation. I don't know if they thing I'm young so can handle it but no they give me some numbing shots in my hip to try and help that pain from the needles and tub entering but other then that I'm awake I feel everything and I get no pain meds, luckily i have some anyways. This last biopsy was done by a pathologist that my specialist reccommened, she gave me as much numbing stuff as possible (she said it's the stuff they use when working on your teeth) and I felt it all. The nurse held my hand and my other hand squeezed the sheet under the pillow as I cried. they kept telling me to breath and take deep breaths so I don't hyperventalate but it's kinda easier said then done. They did one tube then said wasn't long enough and got another one. The lady said I have "deep cavities" and it's more painful for some then others. It was horrendous! I about came off the bed when they started to suck the marrow out, I felt like a baby crying so hard but I couldn't help it. yes I was in pain for about 4-5 days. I got home at 3 from biopsy and went to sleep until the next afternoon. I was sore two days after that where i limped and had help doing stairs. then for another about 3 days i was sore to sit and bend down or move certain ways but could walk fine.

yes the 6th is only a week away but omg it seems like an eternity while waiting...

[pamsouth]

PB, Thanks for letting me know about your biopsy.  I will be 64 in a couple of days so I thought maybe that is why I have so much pain with the bi-opys. however I see you had a lot of pain too.  Sorry for that but makes me feel like I am not the only one.  Got to make an appointment with my new onc for sometime in January.  I met with him in October and he mentioned the BMB and I went ouch I don't do so well, muscular skelton problems lots of pain. So am hoping my other labs go well so I don't have to go back to having BMB.

Onc said most of his patients don't have pain, I said yea but I one that does, very, very bad!!  Wonder how it is that some patients tolerant the Bi-opsy so well as I have never considered myself a wimp.  But pain is pain.

Anyhow sorry you are going thru this at such a young age.  I will be 64 years old New Years Day.  My children are grown and most of my grandchildren are in college. 

What ever the road you have to travel there will be a lot of mom's on this site that will want to help you thru it. 

Even a lot of families and friends don't want to hear it, or get tired of it, as they don't understand it.  Sort of like AA people helping other AA people.  You might even find some people on this site that are your age and struggling with the same issue, like having children and all.

Talk to you Later, Prayer going up for you, PamSouth

[Pinkbubbles9642]

Yeah you are not a whimp or I am too lol but all my doctors, even my primary care who first found out and sent me for biopsy said "I''m not going to sugar coat it or lie to you hun, they hurt" So you are not a whimp and if you're doctor says a lot of people don't have pain you tell him then you lay down and see what it feels like LOL. HAPPY EARLY BIRTHDAY :-D!!!!!!

[pamsouth]

PB, 

I love YOU!!!

Regarding your response;  > if you're doctor says a lot of people don't have pain you tell him then you lay down and see what it feels like LOL. HAPPY EARLY BIRTHDAY :-D!!!!!!<<

That is really a good one.  I got a good belly laugh.

Thanks for the HB

PamSouth

[Susan61]

Hi:  You sound like you have learned a lot in a very short time being your so young, but I can tell you have your head in the right place.  Never worry about what your friends think or say, or anyone else.  You just keep a good attitude, and proceed with your care.  I have a very good feeling about things starting to get better for you, and you make sure you keep all of us up to date.

      You have more friends right on here than you will ever have.  We are spread out all over the country, but our love and thoughts are all going your way.  I am sending you a big hug.  Hope you can feel it.

     The New Year is just around the corner, and its not just you.   All of us are looking for better things all around in the year to come.  You will be able to have the life you want.  It will just take time.  Take care of your health first, and the rest will fall into place for you.  Your age will get you through to see all the new advances in Cancer Treatment through the years.

Susan

[Susan61]

     Happy Birthday Pam:

             I was just 64 in November.  I like that one about telling the doctor to lay there, and see what it feels like.

I felt like telling the doctor the same thing when I was in clinical trial.  He would do it in the office with only Lidocaine, an I wanted to kick him so hard.  He actually told me I was just a very High Strung Person because I could not take the pain.  Get your BMB done in outpatient at the hospital.  I finally insisted once I was done with the clinical trial, and was back with my regular Oncologist.  They refused to do my BMB in a hospital setting to make it easy.  I think it was because I was not PAYING FOR IT.  My Oncologist started to do the Lidocaine, the IV Versed with some Demerol in the IV, and then it was a breeze.  The only pain I had was after the meds wore off, which was tolerable.

Have a Very Happy New Year Birthday!!!!!!!!!!!

Susan

[lala]

Whoa.....you poor thing...losing my mom when I was 45 was tooooooo hard for me!  I cannot imagine going through that at such a young age.  I have kids your age......and I think you are very brave!  I read your post last night and am eager to read your news on the 6th.  I have had cml for 6 years and am considering going to U of M to see a specialist this summer.  I want to take the advice of our leaders and see a specialist in hopes of lessening my meds.  Soooooo...keep us all posted regarding your results and feelings.  If I didn't have my daughter who is 23 and my best friend to talk to, I would go crazy.  Soooooo, we all understand the need to talk honestly about having cml. Thank God for the meds, but it still is a life changer.....and more so for some than for others.  Keep looking for the right person to talk to and to receive comfort from.....we all need it!  .  Sending warm energy from cold Chicago!  ~Lala

[lala]

Hi, Vandyfan.  I was touched by your posting.  You have had a tough time with your son.  I hope he continues to do so well.  It is a bad disease.  My brother died at 38 of complete liver failure due to alcoholism and it broke my heart. In the ICU, I saw the nurses look at him....I said he is a very good guy with a very bad disease.  Thank God you helped him get the help he needed.  It is a rough family disease.  Your post is a good reminder ....life is hard for many....with and without cml. 

My story is I buried my mom, 38 year old brother, and 46 year old brother all in a 15 month period.  Two years later my platelets were out of control!  I think all the stress just about killed me!  Thank you for sharing your story.  Happy 2012 to all of us......hope it is a kind year.  ~Lala

[lala]

Hi, MJ! Tomorrow is your big day with the doctor.....right?  I hope you get good news.  Let us know how your appointment goes....we're all hoping for the best!  ~ Lala  

[Vandyfan]

Lala, thank you for such an encouraging reply.   There are times in which life just overwhelms us.  Your losing three close members of your family in such a short time had to be overwhelming. (I lost my elderly parents in a 15 month timeframe, but I cannot imagine the pain and stress of losing two brothers plus a mom over that time period.)  You deserve a good new year.

I do have to wonder if stress played a part in my case as well.  Even when alcoholics get clean, they and their loved ones all live one day at a time.   Plus, this past year my wife went through treatment for breast cancer.  Despite running a fever and being in the middle of chemo she was determined to get from Tennessee to Las Vegas to see her favorite singer (Rod Stewart) perform one last time.  (We went via Amtrak to avoid the stress of flying and had a blast, even stopping to see the Grand Canyon.)  Sometimes you just have to tell cancer to sit a spell while we live life.  Here's to a blessed and better 2012 for all of us.

[lala]

Wow....sounds like a great trip!  You guys have had a lot of stress.  Every time I left my oncologist's office, she said--no stress, now, and she meant it.  Regarding your son, have you looked into FA.  It helped me a lot.....I used to attend meetings, and now it is available on line.  My friend is a member, and it has given her much strength during a very tough time with her son.  Thanks for your nice response....my family died ten years ago, and it still makes me cry!!!!!  ~ Lala