29 replies to this topic

[melissaj35]

Hi everyone.. Im a 35 year old wife and mother of three. I would like to know if there are alot of young people with CML. I live in Mississippi and I have seen no one my age sitting in the waiting area. I suffer with depression and sometimes I wish I could talk to someone who is a mother and goes through some of the same (fatigue, worry, etc).

[CallMeLucky]

Hi Melissa - unfortunately there are probably more of us around than should be.  To be honest with you, even one person with CML, at any age is too many as far as I am concerned.  I am 37 yrs old, I am married and have two young children, 4 and 6.  I'm sorry that you had to join us here.  On the up side, there are a lot of people on this forum who understand what you are going through and are extremely supportive.  Many under 40 and many over 40.  We have lots of newbies (I was diagnosed in June 2010) and we have some veterans who have in treatment for many years (that's right, I said many years).  There are parents (moms and dads), grandparents, younger and older singles, pretty much every demographic; it appears CML does not discriminate.  I'm not sure how long you have been dealing with CML or what treatment you are on.  You are probably aware by now that there are come very good treatment options out there and while it is a serious disease and a huge burden on us and our families, it is not the terminal disease it once was.  There is very good reason to believe that you will live a long time with this disease, and dare I say it, we might even see a cure in our life time.  I think you will find this forum to be a great source of support.  Others will respond in kind, I hope you will share your story with the rest of.  Welcome to our little corner of the world

[HeatherZ]

I am 38 and a mother of 2 in PA.  I know what you mean about not seeing anyone your own age in the waiting room; I think about that every time I have an appointment.  You can certainly email me if you wanted to chat or vent.

Heather

[melissaj35]

Thanks Heather...Im going to need someone to talk too and Call Me Lucky,,,, I have actually been in treatment for seven years now. I started of on Gleevec and now on Spyrcel. I was so miserable on Gleevec, never could keep it down good. The spyrcel, well I can deal with how it effects me.

[lthouse612]

Hello Melissa, I'm no mom, but was dx when i was 33. I am now a 37 year old, stay at home dad and I just wanted say that I completely know what you mean about sitting in the waiting room with no one that's your age. I sorta feel like they're staring at me sometimes, wondering how can that be? or maybe think I'm just visiting someone else. Most that do know or find out I have CML always comment on how good I look as I do try to keep in shape as much as possible. I know they (the other patients) don't mean anything by staring but it is sorta weird I suppose. Be that as it may, I sometimes even have to take my boys (5 & 8yrs) with me depending on the day. Now with school it's been just me but before over summer break it's not so easy. I do have constant fatigue and it's been worse since they've increased my dosage of gleevec. I'm now on my way back down (numbers have gotten better once again) but my body is still adjusting. I think at some time or another we all tend to feel down but it's nice to come in here and vent and speak your mind on how your feeling. That's what I've found anyway. Life is hard enough with everything else we're all trying to keep up with... now with CML added to that it's that much more difficult. There are support groups that are geared towards the "younger generation" and I've yet to go to any here locally. You oncologist's office may be able to point you in the right direction or the LLS website. Depression I've learned, can manifest itself in many different ways. It's not been easy but again with the people on this site and the support of family and friends, well it does make it a little easier. Take care and good luck!

Mark

[HeatherZ]

Like Lucky, I am also one of the newbies.  I was just diagnosed in March of this year and have been on Gleevec since April.

[melissaj35]

@ Mark. It does feel strange sitting looking like a caregiver and not the patient. I really get looks when the lab techs call my name and I get up. Sometime I wonder...Are they scheduling me only on the days when the 70+ patients are here or what . I dont mind being there but sometimes I just want to start up a conversation with someone while I wait.

[jar]

hi melissa..........I too find myself being the youngest at my clinic...I am 33yrs diagnosed at 31 been on gleevec the whole time, have good days and bad days.....today a bad one! It is such a relief sometimes to speak to someone who really understands what we are going through, I find it hard to strike a conversation at the clinic. This forum really helps me as awful as it sounds it helps to know I am not crazy and others do go through the same things. I am sorry you have had to join on here but everyone on here gives me hope and comfort......all the best x

[jar]

hi melissa..........I too find myself being the youngest at my clinic...I am 33yrs (and a mother) diagnosed at 31 been on gleevec the whole time, have good days and bad days.....today a bad one! It is such a relief sometimes to speak to someone who really understands what we are going through, I find it hard to strike a conversation at the clinic. This forum really helps me as awful as it sounds it helps to know I am not crazy and others do go through the same things. I am sorry you have had to join on here but everyone on here gives me hope and comfort......all the best x

[CallMeLucky]

I learned that someone on this forum goes to the same Onc I go to, it turned out we were both scheduled to have an appointment on the same day so we had the opportunity to meet and speak in the waiting room.

[melissaj35]

Thats Great Lucky

[mck_001]

HI!  I'm a 28 year old mother to three living with CML.  I'm also on Sprycel.  I am definitely on an emotional journey while dealing with all the physical parts of having CML and taking Sprycel.

[jenn]

My b/f has cml,dx July 21th 2010 .He is 37 and we have a 4 year old and are getting married 10-10-10 !!!!! What a shock in the middle of planning a wedding.I can tell he is'nt himself  even though he tries to be superman. I try to anything extra that I can so he can rest.He has been on Gleevac for a month and today was told to take a week off because his platelets are to low,just waiting for him to get home so I can look @ the cbc results....

[Tedsey]

I hear what you are saying.  I feel your despair.  I am not as young as you, but I have two little children.  I usually have to bring my 1 year old and 3 year old with me to the oncologist, CBCs and other treatments.  Wish I didn't have to, but there is not always someone to watch them.  CML suddenly exploded into my life.  I have to work around it and with it.  So, I had to turn my thinking around too.  At first I was very against bringing my children anywhere near a cancer center.  I felt it was inappropriate.  Now, I think that it is probably a good way for them to get used to CML without it being so scary.  Mundane is good.  It was very sad for me in the beginning, just like you.  I had to stop nursing my baby cold turkey.  It was horrendously depressing as it was physically painful.  Any time my kids would cry, I could only imagine them calling out for me and needing me when I was no longer there to comfort them.  They were too young to remember me.  I didn't know how I would soothe my children without giving them my breast.  But I adapted, and so did they.  10 months later, it has gotten more tolerable.  I find I am generally very happy with some short-term depression that cycles every now and then.

Family was more available to help when I was first diagnosed.  So, I often sat alone for hours and hours with very old people in a huge, impersonal, cancer center.  Sometimes I would play a game to see if I could spot anyone under 40.  Sadly, I did a few times.  It didn't make me feel any better.  If it weren't for this board, I would have thought I was the only younger person with this disease.  I don't feel so alone now.  I also do not feel so young.  My age seems not to matter any more.  I feel a bond with many people, of all ages, who live with CML.

Yeah, it appears cancer strikes the elderly most often.  But clearly, it strikes the young & middle-aged too.  And children.  It does not discriminate.  So, I cannot either.  Some days there are moments where I feel like I will grow old like "everyone" else.  Other days I get mad at the healthy people around me thinking that they could get hit by a bus or drop from a heart attack.  So there!  But so could I.  Even more humbling.  There are times when I feel so jealous of older people out and about (or younger people pushing strollers past my window).  I still get a little sad when I see an older woman and older man walking down the street---I get how hard of a reminder the waiting room is.  But I also do not know the kinds of things these individuals suffered throughout their lives.  And I realize that if someone were to just look at me, they wouldn't know the suffering in mine.  I feel human life is precious no matter how old you are, especially if you are loved and love others.  Not all those old people got to see their kids grow up (if they had offspring).  It would be far worse to outlive my children.  And now that I seek care at a place that welcomes my kids and works around my life, it makes things a whole lot easier.  I bring life to the cancer center along with my children.  Hopefully, it will be a long, long time where my kids will be too old to want to come with me, (they actually get a kick out of the place--and it is near a really good park), or until there is a cure.   

There is so much support on this board.  You are not alone.  I also suffer from depression.  Feel free to write me if you need to.  There is much hope that CML will become a chronic illness that can be fully controlled by drug therapy.  Being diagnosed for me was terrifying.  That was and has been the worst part.  So, I would say, the worst part for you is over.  Now, you will start to cope.  It will get better.

Tedsey

[reedgirl]

Tedsey,

     So very well written.  I look forward to reading your writings, sad as they are, they are also uplifting.  My heart breaks for all the parents with young children.  Ours is almost 17, my fear or worry is whether or not my husband will be able to walk her down the aisle when she gets married and dance with her at her reception.  I know that he will, I have faith that he will.  I also know that everyone else with children thinks the same thoughts.  What a terrible illness to have, but there are so many people out there with much worse pains and hurts in life.  I guess we should focus on the good and be grateful to have those times and moments.  So glad you are able to take your children with you to your appointments.  Every day spent with them is truly a blessing to be cherished!  Much strength to you and all parents with young children.  You are teaching them valuable lessons they will never learn from a textbook!    Audrey

[mck_001]

Tedsey, my waiting room game is "Who's most likely...." and I fill in the blanks.  For example, "Who's most likely to have a flask on them?"  It really helps the time pass and brings a good laugh every time.  And, you're right...cancer does not discriminate!  My husband's 14 year old sister had two weeks left of her chemo treatment for bone cancer when I was diagnosed...she is now done and doing well, but cancer should not have come so close to her or my poor husband again right when we were all celebrating the end of my sister-in-law's chemo treatments!!

[melissaj35]

@ Tedsey. Thank you. Its nice to know that Im not the only one feeling the same way. I also look at people and get upset when they look healthier than me. I see friends,classmates, and family enjoying their day to day life.  But... Im starting to understand that I dont know what all they have been through either. I have let this disease make a lot of decisons for me. I wanted to go back to school, join my church dance team, etc.. and I just end up talking my way out ( I might get tired, bone pain, brain fog). I'm always questioning my future especially when I feel pain and thats when the depression kicks in.

Thanks everyone for writing me back. It really does help me feel better

[fawnc46574]

I am a 29 year old step mom of 2, I take gleevec and have never seen any younger people in my witing room either. My mother who is 48 goes with me and we are the youngest ones there   I was diagnosed at the end of July 2010, it was a total shock I went into the emergency room for another reason and was in the hospital for just over a week because of my CML. I can't even find people in my area young or old with CML to talk to I drive 3 hours to my doctor because I know that it is a good hospital.

[rebecca428]

Hi Melissa, I wanted to let you know that my son was 14 when he was dx with CML he is now 15 and doing pretty good. He had a bone marrow asperation a couple weeks ago that came back saying that there were no leukemic cells in there, thank God and Gleevec.  

[melissaj35]

That is wonerful Gotfaith. That gives me and others a light at the end. I pray he continues to get good news.