still_fighting's Journey with Leukemia

Survivor: Leukemia

Patient Info: Living with cancer as a chronic illness (undergoing adjuvant therapy), Diagnosed: over 11 years ago, Female, Age: 58

  1. 1
    over 4 years ago
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    Cancer is back/Recurred

    Oh No

    When I went to my post-op in Feb. of 2006 I went to my appointment expecting a good report laughing and joking about how my voice would change and I'd have to fight my then husband over his razor. The surgeon told me that I had leukemia but that it was not curable. That generally this type of leukemia was found in older people and that it could only be treated when it actually flared up. He recommended that I go see an oncologist and recommend one for me. I was devastated! Here I was only 47 and had a 9 yr. old son and a 7 yr. old son! I wracked my brain trying to remember all my family history to find out if anyone had had leukemia in my family but there wasn't anyone. I cried for days and told my sons and my family. Everything moved quickly after that...many, many blood tests, bone marrow, DNA test, MRI's. Many doctors visits. My oncologist is great, she's been a true blessing to me and I thank God for her.

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  2. 2
    over 4 years ago
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    Chemotherapy

    Drug or Chemo Therapy

    After (2) years of blood tests every (3) months and bone marrow once a year staying in the 'watch and wait' stage. In Feb. of 2008 I went in for my usual blood test and my oncologist then told me that my leukemia had gone crazy over the winter months and that I had to have chemo treatments right aways. I went in on Monday and had chemo lessons Wednesday and started treatment on Thursday that very week. Again I was thrown for a loop and devastated. I knew I had been feeling weak and sickly but I had just assumed that it was because of the strep throat that my sons had brought me from school. I had been fighting illness for several months and had a huge lump on the back of my neck. They started my chemo treatments specifically for CLL patients and I had to have them twice a week for a month, wait 3 weeks and do the treatments again...6 to 8 treatments in all. After my second treatment, I had to go in and had blood transfusions. I had to have 3 blood transfusions during the course of my chemo treatments. At that time I had already been divorced, been fighting constant infections from a failed bladder sling and had my two young boys to take care of. Bless them, I got so weak from my chemo treatments that I could barely walk, dress, cook, even drive my sons to school. I had to have a port put in during these treatments as the blood transfusions tore up my veins. I'll always have to have it because of the type of leukemia I have. I got so very sick from the chemo treatments. I never lost my hair, but the medicines made me sick to my stomach, dizzy, had extremely dry mouth and my skin was always dry. My stomach couldn't take certain foods, just the 'smell' would cause me to be sick. But after talking to my oncologist about it they gave me medicine to fight the nausea. After the fourth treatment I wasn't getting any better and my oncologist changed my treatment to what they call "Red Devil" which is a chemo treatment they use for general cancer patients.

    Easy to Do: Disagree
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Disagree
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  3. 3
    over 4 years ago
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    Surgery

    Procedure or Surgery

    I went in to have my gallbladder removed, a hernia repaired, a bladder sling implanted and have a total hystorectomy. From my hystorectomy they found that I had CLL (Chronic Lymphocytic Leukemia) the surgeon told me in my post-op followup that I had leukemia and that it was incurrable. He also told me that I needed an oncologist and made a recommendation for a good one. I have had side-effects from the bladder sling and having to deal with being diagnosed with leukemia.

    Went as Expected: Agree
    Minimal Recovery: Disagree
    Minimal Side Effects: Strongly Disagree
    Minimal Impact to Daily Life: Strongly Disagree
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  4. 4
    over 4 years ago
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    Flu-like symptoms (fever, chills, sweats)

    Side Effects

    After I started my chemo treatments they told me that I would have 'flu like' sympthoms and boy did I! I had night sweats, chills, fever, sick to my stomach, mouth sores, weakness, brusing and thinning hair. I had dry-mouth so bad that I was constantly drinking but I had a hard time eating because of the mouth sores and the nausea. I couldn't stand or walk very far and I didn't have the energy to even carry my own purse. I had trouble even dressing myself or sitting in the tub or standing in the shower. Washing my hair was even too hard at that time. I had to have help in almost every aspect of my life. I had trouble with my teeth and gums because of the chemo which was also part of my side effects.

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  5. 5
    over 4 years ago
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    Remission

    Celebration

    After 9 months of treatment I went back and was told that I was finally in remission...Praise God! I had finally hit the turning point in my treatments! I still had to go in for testing every 3 months but I was feeling so much better. You never know how bad you really feel until you start feeling semi-normal again. I was so very thankful to God, my family and my oncologist and American Cancer Society for taking me to my treatments and staying there until I was finished. Sometimes the treatments would last up to 8 hrs. at a time. Time to celebrate remission!

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  6. 6
    over 4 years ago
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    Cancer is back/Recurred

    Oh No

    In Feb of 2010 I went in for my usual blood work and again the leukemia had reared its ugly head! Time for more chemo my oncologist said. I REALLY was beginning to hate the month of February...it seemed like every Feb. I ended up with bad news on my leukemia. My oncologist said there was a new chemo drug that was out specifically for CLL and ALL patients and that I would have to take at least 6 to 10 treatments and that it would be like having the flu.

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  7. 7
    over 4 years ago
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    Chemotherapy

    Drug or Chemo Therapy

    On this new drug I had horrible side-effects. I hurt everywhere. I was so achy I could not get comfortable anywhere and I was always sick. I would take my treatment on Thursday and be completely miserable over the weekend. It got so bad that I told my ex-husband to come into my house first because I really didn't know if I would make it and I didn't want my boys to find me if I was so sick I couldn't move. Same sympthoms as the first time I received chemo but much more intense. After the 4th treatment my oncologist did another bone marrow and said that I still had 20% of cancer cells still in my marrow. After my 5th treatment I talked to my oncologist and we both agreed that I would stop the chemo treatments and start my Rutuxin treatments to maintain semi-remission. It would be a month of treatments, once a week for a month, then wait six months and do another round of treatments. This would last two years. It has been a year so far and I'm still fighting.

    Easy to Do: Agree
    Minimal Side Effects: Strongly Disagree
    Minimal Impact to Daily Life: Strongly Disagree
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  8. 8
    over 4 years ago
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    Remission

    Celebration

    I went in to see my oncologist yesterday and YAY! I'm still in remission! She said that the Rituxin treatments are working so I'll go through the rest of my treatments to make sure I STAY in remission. One month of treatments every 6 mths is okay when I know that it is keeping me healthy. Found out that my port is broken and I'll have to have it removed and another one put in soon though, had to take my treatment in my arm this time. My veins are blown from all the blood transfusions so its hard to find a vein anymore. So I had some great news but some 'eh not too terribly bad' news yesterday.

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  9. 9
    about 4 years ago
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    Milestones

    YAY my oncologist said I'm still in remission so the Rituxin is doing it's job! This is the end of my 2-year treatment plan. After this, I'm done sooooooo 3 more treatments and I'm done with THIS session. Kind of a 'good thing, bad thing' because I am a high-risk patient and we don't know what we should do after this last round, my oncologist doesn't really want me to stop the Rituxin treatments because obviously they are working to keep me in remission but we don't know about continuing them after the 2 year treatment plan. Another words...'if it's not broken, don't fix it' and if we DON'T continue them them I go back to the 'watch and wait' stage again. Well, I am doing good for the most part, still have an infection my blood work says...personally I think it's the constant chronic bronchitis or the usual sinus infection I always seem to get this time of year. I'm on a wks worth of antibiotics to knock it out so we'll see. The thing with having leukemia is that your cold might last a wk but my cold goes into a sinus infection, which goes into an upper respiratory infection and on and on and on...UGH. Any antibiotics have to be doubled on taking them so I have to take 20 days where someone else would only take 10 days worth. Well...I am doing good for the most part and I thank God everyday. God bless you all and keep fighting!

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  10. 10
    over 3 years ago
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    Drug or Chemo Therapy

    I go back in for treatment #2 on this 1st round tomorrow. It's easy because of my port but the side effects are always different so I am neutral on those. I usually feel really bad for a couple of days before I start feeling better again. This is the only time I can honestly say when they tell me I'll feel like I've got the flu I have to agree. It's working and I thank God for every day that he gives me...they are precious even with teenage boys! lol I'll be honest and say I look forward to it being over but at the same time I know that the treatments are working and keeping me healthy. God bless everyone and KEEP FIGHTING!

    Easy to Do: Strongly Agree
    Minimal Side Effects: Neutral/NA
    Minimal Impact to Daily Life: Neutral/NA
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  11. 11
    over 3 years ago
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    Drug Therapy or Medication

    3 down and 1 to go. I'm still having trouble getting my potassium level back up to normal so I'm having to take horse pills everyday now. My 'infection' cells (or white cells) are higher than usual so my oncologist says I've got an infection 'somewhere'...I went to my family doctor and she says I have a 'sinus/ear infection' so more than likely that's the problem. I have to go back next month for a blood workup to make sure that I'm not becoming allergic to my treatments. It never occurred to me that was an issue. But under the circumstances I'll do what I have to to stay healthy.

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  12. 12
    over 3 years ago
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    Chemotherapy

    Drug or Chemo Therapy

    Today I finished my 1st round of my 2 yr treatment plan with the Rituxin I don't have treatment for another 5 months but my oncologist wants to see me next month. I'm showing a bad infection but we can't figure out where it is. I went to my GP and she said I had a slight ear infection. I'm REALLY REALLY tired this go-round but the chemo nurse said it was to be expected so I'm not worried...I'm still here, I'm thanking the good Lord and I'm STILL FIGHTING! Happy Thanksgiving everyone! God bless!

    Easy to Do: Strongly Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Agree
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  13. 13
    almost 3 years ago
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    Drug or Chemo Therapy

    Start my next round of chemo tomorrow for a month. Nervous but necessary. I'll find out tomorrow how things are looking for me and my current treatment.

    Easy to Do: Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Disagree
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  14. 14
    almost 3 years ago
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    Drug or Chemo Therapy

    Well I started my next round of Rituxin and UGH what an experience! I had a really bad reaction this time and was full-blown before anyone noticed! I was so cold I could hardly talk and my muscles cramped up so badly that they had to stop chemo and give me something for the pain while they got me warm. The past 2 treatments since then as soon as they notice that I'm getting chilled they warm me fast! This go round I've felt more like those mysterious 'flu like sympthoms' than I did in the past. Weak, achy, head aches that don't go away for a couple of days and hot and cold sensitivity. I get so hot that I'll break out in a sweat all over and the next minute I get so cold I have to cover up. I know this is a necessary evil but UGH! Sometimes it just seems to get harder and harder...I don't care...no matter what I'll keep fighting! God bless everyone having to endure chemo and their families!

    Easy to Do: Agree
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Disagree
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  15. 15
    almost 3 years ago
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    Celebration

    YAY I've finished another round though this one was a tough one I made it! The Rituxin hit me harder this time than it usually does and I had a really bad reaction my first treatment this round...my oncologist and chemo nurses now know that I will ALWAYS have a reaction of some kind at the beginning of my treatments and they take action right away. There seems to be a certain point that I get to that always kicks off a reaction and the side effects really DO feel like I have a bad case of the flu now. UGH I'm just happy and thankful that it's done for another 6 mths!

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  16. 16
    over 1 year ago
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    Long-term catheter

    Procedure or Surgery

    So I had to have another surgery to replace another port...this is my 3rd one now. It went great..a lot better than the 2nd did. My surgeon was excellent and even put the port in the same place it had been in the last 2 times.

    Went as Expected: Strongly Agree
    Minimal Recovery: Strongly Agree
    Minimal Side Effects: Strongly Agree
    Minimal Impact to Daily Life: Strongly Agree
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  17. 17
    over 1 year ago
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    Drug or Chemo Therapy

    Well I did my chemo...in the 3rd of my treatment my port blew...UGH so NOT fun! My port bubbled up the size of a peach and they had to remove it and start it in a vein which is REALLY hard to get on me anymore...they had to stick me 3 times before they found a viable vein. I knew I had 1 more treatment to go before I was done with this round and it was rough! Turns out (according to my surgeon) that my port was punctured in the hose and that's why it blew. He said the needle must've slid down the side of the port and into the hose. UGH yeah again...NOT FUN! The day of my last chemo I had appointment with my surgeon. We had to wait 3 wks after my last treatment before he could do the surgery. In the meantime, my youngest and I found his father passed away at his home. It was terrible! We hadn't heard from him in almost a week and decided to check on him. We went and walked around his duplex and found his car there. I got really worried and asked his neighbor if she'd seen him lately and she said no. I called the police to do a wellness check on him and when they came, they had to break into his apartment and that's when they found him. He'd been gone about 4 days from what they could tell. We (my son and I) were devastated! He was only 45 yrs old. It turns out according to the ME he passed away from a massive heart attack. God bless his heart. We miss him everyday. He was my ex but he was one of my very best friends and the father of our boys. It's been a really hard year...lost my dad in April and my ex in July...he was supposed to out live me so he could be here for our boys. Just wanted to vent I guess...thanks for reading my mess...stay strong and keep fighting! God bless each one of us!

    Easy to Do: Strongly Disagree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Agree
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  18. 18
    over 1 year ago
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    Cancer is back/Recurred

    Oh No

    Well I went in last Wednesday to start my next Rituxin and had one of the worst experiences ever. My oncologist said my leukemia is starting to get 'active' again and we need to start on a new drug...Imbrivica I think it's spelled. She wanted me to go ahead and have the Rituxin and boy did I have a bad reaction...now the chemo nurses think I've become allergic to it and now I don't know if I'll take my treatment this Wednesday or not. The drug that was keeping me in remission no longer seems to be working so now it's time to change up my medication. I'm nervous about side-effects because I've had such bad ones before. We'll see... I hear this new pill is pretty good so hopefully it'll be good for me too! :)

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  19. 19
    11 months ago
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    Chemo pill causing heart problems

    Oh No

    So I went for my usual Rituxin treatment in January of this year and I had a TERRIBLE reaction to it. But finally got through my treatments and my oncologist decided it was time to change up my treatment and put me on Imbruvica instead of my Rituxin. I was afraid of the pill and met with my oncologist and we talked it out and agreed it was the best option. After I started the pill I got sick with a cold that ended up lasting me a month and had to go off the pill until all the infection was gone...felt like forever. I started back on the chemo pill and everything was fine for about a month then I started feeling like something in my chest was hopping around doing flip-flops. The next day it was still happening and then I started getting dizzy and took myself to the ER where they had to get my heart beat back into rhythm. The ER doctor made me an appointment with a specialist who put me on a heart monitor for 2 weeks and gave me additional medicine to help with my heart. Before the 2 weeks were up my heart started getting crazy again and I ended up spending the night in the hospital because I had gone into Afib. Now I have developed Afib because of the Imbruvica but I can't live without either one. The medicines the heart doctor has to put me on doesn't always work well the any of the chemo drugs I have to take so there's ALWAYS a risk. One more thing to worry about. UGH!!! The heart doctor made an adjustment to my heart medicine and so far I've been doing fine (thank goodness) but I have to take only one of my chemo pills a day instead of the 3 I was supposed to. I lost my medical help the 1st of June so now I'm scrambling around trying to get a supplement insurance to go with my Medicare but because I'm under 62 I'm finding this VERY DIFFICULT. I honestly don't know what I'm going to do because the chemo drug IS so outrageously expensive. That 20% every month is too much for me to pay. I sure hope we can figure it out before I have to go back to these specialists. Now I know why the elderly end up starving because they can't afford their medicine and eating. So now I have heart trouble as well as dealing with a very high risk form of CLL. UGH...the Good Lord willing I'm going to keep on fighting no matter what! God bless and ya'll keep fighting too!

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  20. 20
    4 months ago
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    Chemotherapy

    Drug or Chemo Therapy

    Well another chemo pill shot down...Zydelig won't work for me. Apparently it is messing with my liver enzymes, way to high. So my oncologist has decided to take me off that med and keep me on my Rituxin but instead of a 4-week treatment plan every 6 mths I have to have it every 2-weeks now. I never considered what effects all this medication does to other organs in the body until now. I had to trust that my oncologist had/has my best interest at heart at all times. Finding out that I have a rare harder to treat kind of the CLL doesn't make dealing with it any easier. All this time...10 years!...and had no idea! It's getting harder to fight but I'm NOT giving up! It is difficult because of having to have yet another port put in...this is my 4th one (had a new one put in last year and that didn't last long) but my surgeon was excellent. Still fighting and still going on as usual.

    Easy to Do: Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Agree
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  21. 21
    over 4 years ago
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    Remission

    Celebration

    I am in a semi-remission so I celebrate but with a tendency to be cautious. I feel better and am doing pretty much everything I did before. I still get tired easily and I am still suseptible to infections so when I get a simple cold it could last up to a month or more and usually go into something else entirely. I live my life as though I do not have leukemia because if I didn't I would be terrified to DO anything. I try to stay as healthy as I can and trust God to help me with everything in every aspect of my life.

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