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Diagnosed with ALL, PH+ at age 35

Ritha10
Posts: 9
Joined: Sep 2012

Hi everyone,

I was diagnosed last month with Acute Lymphoblastic Leukemia and Philadelphia Chromosone positive. I am 35 now. I am so scared. The disease was accidently discovered after a visit to the ER due to abdominal pain. Currently undergoing HyperCVAD protocol chemo. I am terrified about the future. I have two small children. I don't know what to do. Anyone who is in a similiar situation or who has survived this horrible beast?

nempark
Posts: 580
Joined: Apr 2010

First, I must let you know that this is a rough board and I guess due to the illness and most being young people it becomes very difficult to get answers. I am writing because my daughter was diagnosed last November. Her situation is similar to yours she went to the ER more than once with pains in her legs, arms and abdominal pains, finally the last time she told them that she was not going home unless they find what is the cause of the pains. The following day after many tests she was diagnosed with Lymphoma but further tests showed ALL.
Immediately, she started the induction treatment and after a month or two of the treatment she started to feel well. Unfortunately a few weeks later she said to me that she is feeling exactly the same way she felt in the beginning, when we went to see the Doc he did a bone marrow biopsy and then gave us the bad news, the induction chemo did not work. So they put her on a new and more intensive combination of chemos. This was the beginning of the horrible journey to kill this beast. I sincerely hope you have an easier journey, but for your information and benefit, it really is not easy. She is 44 and is not married and no children. You asked about survival, well come November it will be one year since diagnosis, and I think that despite all the hurdles, I really think she is on the road to recovery.
Did you do any research? Are you married? Do you have support and care for your children?

What you are feeling now is fear of the unknown and fear for your two children, but no one knows what the future brings for us. Medicine had vastly improved for cancer and the Doctors are well advanced in their treatments. Please remember that a cancer diagnosis is not a death sentence. Chemo for this disease is very challenging but it is doable.
You are probably still in shock. When my daughter was diagnosed, I cannot tell you the shock we were in, Ritha, we cried and cried and cried. My daughter told me that she never knew that she had so many tears and that tears could be so big. It is now 10 months into treatment, we spend most of our time in the hospital (not that this will be the case for you) You see, our situation is challenging, but it works for us, we are Jehovah's Witnesses and we do not accept blood transfusions. Many people feel that you would die if you do not have transfusions, but there are other alternatives that replaces the blood when it is needed. My advice to you is to eat as much as possible try your best to keep your appetite going. I don't know how good this is but it certainly has helped my daughter. I give her a lot of steak, veg, fish and shrimp. At times, what every she feels to eat I give her.
Ritha, after you have accepted this situation, you will be able to deal with it in a more calm manner. I was there and I know exactly how you feel. But my dear as time goes by you will begin to feel better and focus on getting better for you family. This time for us is like a storm and a friend told me that we are "the eye of the storm" it will eventually pass. Please write and let me know how your treatment is going and how you are feeling. Write me anytime I will be more than happy to answer any questions. I pray that Our Great God Jehovah grant you wisdom, peace and success in your treatment. Take care and think positive you can beat this and you will. Throw your burdens on God and ask Him to guide your health care professionals so they can give you the best treatment. I look forward to hearing from you and I hope when I hear from you, you would have been able to let go of some of that fear (which is normal) crying too is normal, cry as much as possible and eventually that too will subside and you would be able to face this challenge and look forward to a healthier future with your family. I know my thsi is lengthy, but in the beginning I was dying to hear other experiences. If you prefer to be off list, I would be happy to give you my e-mail. Be well friend.

DevonLea
Posts: 22
Joined: Aug 2012

I just wanted you to know that I know how scared you are and I was in your shoes last November. I know the road seems dark and scary, but it is all going to be ok. This is a very treatable disease and it will be cured, you just have to go through the hoops they throw at you. It is a long and difficult road, but before you know it, you will be like me, ten months in and getting better every day, hair growing back and feeling a more like my old self day by day. I know its hard but if you ever need anyone to talk to, I am here. I can give you my email address or number if you need, that way if you ever have questions, you can call anytime. I wish I had had someone who had been through it when I first got diagnosed.

Keep your head up, it will all be alright!

=)
Devon

Ritha10
Posts: 9
Joined: Sep 2012

Hi DevonLea,

Thank you so much for your response. You have given me hope. Please do give me your email address. I would love to talk to you.

I still have not come to terms with the diagnosis. I feel like its an alternate reality as I was feeling great until that one fateful day in the ER.I hate that my body aches all the time, that I am so fatigued, that I have no hair and mostly the worry about my kids is eating me alive.

What treatment are you on? Do you have PH+ as well? I am on Hyper CVAD and finished just one cyle of treatment.

Thanks

DevonLea
Posts: 22
Joined: Aug 2012

My email address is devonvolkel@yahoo.com. Feel free to email me anytime.

I know what you mean about an alternate reality. After the doc told me my news I kept waiting for everyone to say, "Just Kidding!".... It never came. It gets easier to accept as time goes by although I still have trouble believing it.

I am in the maintenance phase of chemo, basically all pills, some vincristine and lumbar punctures. My PH gene was negative, so I don't need a transplant, but still all very scary stuff. It is a huge monster that you are fighting and all I recommend to you is to go day by day. Think positively about the situation, even though it seems dark and dreary. Truly envision those bone marrow biopsy results coming back clear and they will every time. I truly believe that 90% of getting well is mind power. I heard a story last night that touched my heart. A young man had cancer and went to a wise old Indian. He tells the Indian that he has two wolves in his mind, one wants to live and thrive and be well. The other is scared and weak and wants to give up. He asks the old Indian which wolf will win and the Indian says, "Which ever wolf you feed the most." Feed that positive wolf. Think of your kids. I have an almost four year old son who needs me, and when I was in the hospital, I just thought that I have to win this for him. Its what I still do to this day. Don't just think it, BELIEVE it. You WILL win this. It's going to happen.

Well, I hope this helps. E-mail me anytime.

Devon

Ritha10
Posts: 9
Joined: Sep 2012

Hi Nempark,

Thank you so much for your response. I am on an emotional roller coaster right now. I am terrified and desperately looking for some positive experiences. I am currently at home after induction therapy and waiting for results of a Bone Marrow Biopsy. I am praying very hard for some positive news. Please do give me your email. I am so sorry about your daughter and pray that she does well and is pain free.

nempark
Posts: 580
Joined: Apr 2010

How is it going? I know you are waiting for your bmb results, I am sure everything is going to be fine, but don't forget you have continue treatment. Please I am also anxiously waiting for the good news my email. We can all understand that emotional coaster It's now 10 months for my daughter and it seems like yesterday and seems untrue. There are so many times I call her name over and over and over just to remind my self that it is the truth my daughter is sick with cancer, but we will beat this beast. I like the story about the indian and the two wolves. lol

lilysu
Posts: 9
Joined: Sep 2012

i'm sorry to hear the bad news. i think the first thing you should do is to face the disease bravely. then choose effcetive treatment and have condidence in defeating disease. finally, you should pay more attention to strengthening immunity and nursing care, which aer all important for your recovery.

lilysu
Posts: 9
Joined: Sep 2012

i'm sorry to hear the bad news. i think the first thing you should do is to face the disease bravely. then choose effcetive treatment and have condidence in defeating disease. finally, you should pay more attention to strengthening immunity and nursing care, which aer all important for your recovery.

lilysu
Posts: 9
Joined: Sep 2012

i'm sorry to hear the bad news. i think the first thing you should do is to face the disease bravely. then choose effcetive treatment and have condidence in defeating disease. finally, you should pay more attention to strengthening immunity and nursing care, which aer all important for your recovery.

lilysu
Posts: 9
Joined: Sep 2012

i'm sorry to hear the bad news. i think the first thing you should do is to face the disease bravely. then choose effcetive treatment and have condidence in defeating disease. finally, you should pay more attention to strengthening immunity and nursing care, which aer all important for your recovery.

lilysu
Posts: 9
Joined: Sep 2012

i'm sorry to hear the bad news. i think the first thing you should do is to face the disease bravely. then choose effcetive treatment and have condidence in defeating disease. finally, you should pay more attention to strengthening immunity and nursing care, which aer all important for your recovery.

lilysu
Posts: 9
Joined: Sep 2012

i'm sorry to hear the bad news. i think the first thing you should do is to face the disease bravely. then choose effcetive treatment and have condidence in defeating disease. finally, you should pay more attention to strengthening immunity and nursing care, which aer all important for your recovery.

Maribthe1
Posts: 7
Joined: Sep 2012

Hi ritha, my name is mari. I was diagnosed with all at the agar of 28, I myself have children I have 3. At the time. When the doctors found out I was put on treatment after 6 months of chemo. I went into remission, doctors still tought the best treatment for me was a bone marrow surgery. Like u I was very scared but I took the streght I got from my kids and kept strong. After 4 months on the waiting list for a bone marrow and testing my brothers and sisters. Doctors found a perfect match. I'm happy to say its been a year since my bone marrow surgery. And even though it's a very intense surgery. I'm feeling like my old self little by little. And I'm now cancer free. Feel free to email me with any questions at mjdiaz81@yahoo.com take care and stay strong.

afschrieffer
Posts: 7
Joined: Sep 2012

Hey there, i can relate. I was diagnosed with All last july. i thought it was a terrible case of the flu. i am in my mid 30's as well with 3 young children. i have had a bone marrow transplant in november and going thru the set of problems it has caused.

Ritha10
Posts: 9
Joined: Sep 2012

Hi Everyone,

Thank you for your kind words and support. I just completed round 2 of chemo and am feeling a little better. I am trying to take it a day at a time. Still waiting for results from the HLA typing process. The thought of the long journey ahead is scaring me but I have left it upto God to decide my fate.

afschrieffer
Posts: 7
Joined: Sep 2012

hi there. i too was diagnosed with .all. my mutation is different but prognosis is poor. i have 3 young children and would love to talk to you.

Ritha10
Posts: 9
Joined: Sep 2012

Hi - feel free to contact me... I had added u as my friend...I would love to chat as well.

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