TracyD
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Posts posted by TracyD
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I know I have not been around much lately, but life has been a bit crazy the past few months. I know that my last post left some of you wondering how I am, I can say that me, and my family, are now okay. We went through a really rough time that I don't really want to share right now, but the good news is that things are better and we are a stronger family for it.
As for my treatment, I had been on a clinical trial of the drug IPI-504. I had a good response to it after the first two cycles, but I had some progression after the fourth cycle so I was booted out of the trial. It was probaly for the best as I had developed some spine mets which have been causing me incredible back pain, to the point where I was not able to walk for more than a few minutes. Radiation was not an option as long as I remained in the trial. I am currently using a wheelchair to get around if I need to go shopping, or any other place where walking is involved.
My mother and I took my 14 year old daughter out shopping for a graduation dress this past weekend. It was very difficult for me to use the wheelchair as I feel that my quality of life is being taken away from me. However, I realized that in using it some of my QOL has been given back to me. I could either use the chair and enjoy a wonderful day with my daughter, or not use the chair and miss out on a wonderful day. I decided that the former was the way to go.
Today I had my 3rd round of radiation, so far so good, other than some fatigue. I didn't experience this last time I had radiation, so I was taken by surprise. Although, it is a great excuse to lie on the couch in the afternoon and watch movies.
I have a meeting with onc. on 6/12 to start the next treatment, which will probably be the chemo navelbine. I was hoping for another clincial trial, but I don't think that's in the cards right now.
So, that brings me up to date. I am doing okay, other than the back pain and some SOB which comes and goes. I continue to stay involved in the kids activities. I've said all along that they are what keep me going, and that remains true today. Sometimes, spending time with them, when all I want to do is climb into bed an pull the covers up over my head, is the best medicine in the world.
Tracy
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Oh Sandra, my heart is literally breaking for you right now. I think I am exactly where you are with all of this, wanting so desparately to live, but feeling so bad at times that we can't think of anything but the worst.
I wish I knew words that would make you feel better, but all I can offer is a big cyber hug. I completely understand your fears about the summer. Last summer I did everything, waterparks, theme parks, the beach, you name it. This year I can barely walk. I went shopping with my 14 year old daughter this past weekend to get her a dress for her middle school graduation, and I had to bring my mother along to push the wheelchair I am forced to sit in because I can no longer stand for more than a few minutes at at time.
We try to protect our children from seeing the pain we feel, we do not want them to know that we suffer, but it gets harder and harder. When it gets really hard for me, I try and do something happy, something that I totally DON'T feel like doing, like playing a game, or curling up on the sofa and watching a movie with everyone. I keep telling myself that no matter how bad it gets, I'm still here.
I am currently in the midst of 10 rounds of radiation for my back. When I'm done I believe that I will be starting Navelbine too. I pray that you get good results from the chemo, and that you are able to find a way out of that bad place. I think of you and your family often, I wish you all the best.
Tracy
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Just a quick note to say I'm STILL HERE!
I know I haven't been around much lately, but my life has taken some twists and turns in the past six months that have put cancer at the bottom of my "things to worry about" list. Perhaps when I'm in a better place I will be able to share with you all, right now it is just too painful to think about where my life is at.
As for my cancer, things are going okay. I finished six rounds of Taxotere in December. In the end, my scans showed a small lesion on my spine, some progression in the primary mass, and some improvement in numerous nodules. My doc felt that we could do better so we came up wth a new plan. Radiation to the spine to take care of the met, followed by a clinical trial, IPI 504. Ten rounds of radiation showed no improvement to the met, but it didn't grow either. Scans done prior to getting into the trial showed more progression in my right lung, and a new lesion on my kidney.
The trial drug is given by infusion. I get infusions on days one, four, eight and eleven, followed by ten days off, then repeat. I completed two full cycles and have scans tomorrow. If there is stability or improvement I continue on the trial, if there's progression, I'm out.
To date my symptoms have been good. I was fortunate that for more than two years I had no symptoms other than some mild discomfort on my right side where the tumor was growing. Lately I have been experiencing SOB which comes and goes, but it never goes away completely. I also have back pain for which there doesn't appear to be any explanation for. I take painkillers and see a chiropractor, the pain is manageable, but it never seems to go away. When it comes on it is debilitating to the point where I cannot walk, or stand for any length of time.
I want everyone to know that I am so happy to be here, my kids are my joy, and I will do everything in power to be here for them as long as I can.
Thank you all my LCSC friends for being here.
Tracy
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Judy,
Take good care of yourself.
Tracy
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Sounds wonderful!
Tracy
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Hi Ned,
I thought I just posted under this topic, but I don't see it, so here it goes again!
I was on Alimta for four months back in the summer of 2007. I never had a neulasta shot and my blood counts were always good.
I was also fortunate that I never had any side effects such as sob or fatigue. I spent the summer keeping up with my kids and never missed a beat, except for the time spent for the infusion. I just wish that I could have stayed on it longer.
Wishing you success with your new treatment!
Tracy
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Have a great time!!!!
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I got my scan results friday, but found that I couldn't post them until I was able to process them myself. That finally came today when the remaining question from my scan was answered.
The bottom line is that I got a mixed bag of results. It seems funny that when I've told this to people, along with the actual results, they take it as good news, I don't quite see it that way. It's definitely not BAD news, but good news???????
The area that was new in the abdomen last time has diminished, as did the lymph nodes. However, the primary tumor continues to grow and press on a couple of ribs causing a bit of discomfort, but not too bad. Some nodules have shrunk, others have grown. The biggest area of concern at this time is the spread to my spine, I now have a spot at the base of my spine. I am having an MRI saturday and am meeting with a radiation oncologist on tuesday to determine a course of action. Consistent with my last scan, I have lost a lot of volume in my right lung, it is still working but it is about half the size it used to be.
I continue to feel good and go on with my life. I will not worry about things that I have no control over. Those things I will place in Gods hands, and my wonderful oncologist.
Tracy
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I got my most recent scan results yesterday, and they showed a bit of progression so I am out of the trial and on the chemotherapy.
The nodules in my left lung have all grown millimeters. The issues are all on the right side. The two larger tumors have consolidated, it looks like one big mass. There is more extensive thickening of the pleura, and the cancer has officially spread to my diaphragm, and most likely my abdomen, although at this time they are calling them "possible" mets. I'm not buying that.
I have lost a lot of volume in my right lung, to the point that my chest cavity has kind of sunk in, and my right shoulder is pulling forward, I look a bit twisted. This causes some severe back pain which is now being treating with Aleve, which worked well for me last night.
So... we are regrouping. I chose to start on taxotere immediately. I didn't want to wait the weekend, so a couple hours after hearing the news I was at the infusion center getting my first dose.
We here are so thankful that we were able to have the wonderful summer that we did, I was feeling good and we went nonstop. We are now preparing for a new phase of this fight. I have to say, this one is really scary. It is the worst news we have gotten since the actual diagnosis and it's going to take a bit of time to wrap our brains around it.
In the wonderful words of my dear friend Rachel (Fight), we are just going to keep on keepin' on.
Tracy
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Joe,
I hope all went will. I just got back from vacation and saw your post about the vaccine trial...thank you!!
These trials give us all hope. I pray that you have great success.
Tracy
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Test results say STABLE!!!!!!!
I've been in this seliciclib trial for over six months now, and, so far, so good. The side effects have been tolerable and managable, and I'm feeling really good.
Tomorrow we are leaving for our annual vacation at Lake Ossipee, NH. I've been unable to focus on packing with these scan results looming, but now I am full speed ahead. This time tomorrow I plan on sitting on the deck, enjoying a frozen margharita, and watching the boats go by ( I plan on doing the same tonight, just without the deck and the boats!)
I'm leaving the computer at home so I guess this is also a request for a hall pass for this coming week.
Have a great week everyone!
Tracy
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Scan Results
in HOPE
WAY TO GO!!!
Your news just made my day
.Tracy
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Hi Marcia,
I might have some help for your throat problem. I too experienced a soreness in my throat that was really irritated when I swallowed. At one point it got so bad that I would describe it as a lump in my throat. This occurred after about four rounds of the carbo/taxol/avastin combo.
I talked to my onc about it and he had not heard any similar complaints about it, but he did send me to an ENT doc. My ENT doc did an endoscopy (a little camera on the end of a narrow tube inserted through your nose...not fun!) and found an ulcer in my throat. He believed it to be caused by some kind of reflux that I either already had or that was being made worse by the chemo. If you haven't had the endoscopy I would suggest that you request it if you are still having problems. I was told that left untreated it could turn cancerous.
He put me on a high dose of prilosec and it cleared up, although it took a while. I have never had it again since I've been off that particular chemo regimen.
I hope this helps.
Tracy
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Wonderful news!!!! Congratulations on one year and prayers for many, many more.
Tracy
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Looking back, my symptoms started in spring of 2005. I had a sharp pain in my right shoulder whenever I sneezed or coughed really hard. My pcp sent me to physical therapy. I went for a few months and got no relief, so I quit going and decided to live with it. A few months later I noticed I was completely exhausted all the time. It was so bad that one night during my sons karate lesson I actually waited in the car and put my head down on the steering wheel because I couldn't keep my head up. I went back to my pcp who suggested it was just due to having three children. This didn't seem right as I had never been this tired before. She actually suggested that I was suffering from anxiety and/or depression and offered to put me on meds for it. I not so politely declined. In December of 2005 the cough started. I spent two plus months on various antibiotics that didn't seem to do anything.
Finally, my doc ordered an x-ray which showed a shadow which she believed to be a partially collapsed lung. I was then sent for a CT scan. The results were to come in on a firiday and I spent the entire day trying to get my doctor to call me back and give me the results. By this time I had a really bad feeling. Finally, just minutes before five on a friday afternoon I get a call from the doc covering mine, as she was away for the day, asking me if I had a good support system because it looked like I had lung cancer.
I sat ont he floor and cried. I was diagnosed at stage IIIB/IV, and I often wonder what might have been if my doctor had ordered scans the year before when I was complaining of shoulder pain.
Fortunately, I live near Boston and I ended up at Massachusette General Hospital, where I met my wonderful oncologist. If it weren't for him I don't know that I'd still be here.
Tracy
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I just had my third set of scans since I started on the seliciclib trial, and things are still stable!! I have been on the medication, I think, for five months now. It is possible that I am getting the placebo, but the results I am getting would suggest otherwise, as I have never experienced this kind of stability before. Prior to this trial, on and off treatment, I was always considered stable, but with a little bit of progression. At this point, the cancer seems to have stopped dead in its tracks!
I find that I am more stressed about scans as time goes by. I didn't realize how stressed how I was this time until I burst into tears when my doctor told me the news. Sometimes I just feel like there is this big clock out there, just ticking away until it's time for this ugly disease to flare up.
In the meantime I just keep living life.
Tracy
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Hi Sandra,
Wow, this is a tough one. Our kids were 11, 8 and 4 when I was diagnosed. I agree that telliing our children that I had cancer was the most difficult thing that we've ever had to do, so far. We were pretty honest with the older two about what I had. We told them that it would be a tough fight, but that it could be done. When asked if I might die we were honest and toldl them that it was a possibility, but that we were going to fight with everything we had.
My daughter Samantha, the oldest, didn't say much of anthing. My son Joe threw himself on the floor and started sobbing, and praying. It was the worst moment of my life. Our little one, Alexandra, just knew that mommy was sick, but that was all she could understand at the time. She would often follow me around the house with a blanket, trying to get me to lay down and rest. It was the sweetest thing.
We have always told them the truth, through the ups and downs. When my cancer has progressed we tell them, but we leave out all the details. We'll just say that it's growing again and that my wonderful doctor already has another plan so we're moving on. We try and keep them focused on the positive, while not misleading them. I believe that if we are not honest, they will know. Kids seem to sense when they are being lied to, or when they're not being told something. It is a difficult thing to do, but to mislead them would be wrong. What if I die after telling them that everything is going to be okay? I think that would be devestating to them.
We are fortuante that my treatment leavies me feeling well, no nausea, hair loss or anything that disrupts family life. This makes it easy to forget about cancer, until it comes to scan time. Other than that we live a very normal life.
My son told me one of the greatest things recently. He actually apologiized to me because he felt bad because sometimes he forgets I have cancer. That was music to my ears. Ssometimes I forget I have cancer too, I just love those moments.
I hope this helps, Sandra. You need to follow your heart on this, iit will tell you what to do.
Good luck,
Tracy
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Hi Anne,
I'm sorry to hear that you are down, I've been there myself recently. Take some time to let yourself be down, you have a reason, and a right, to do that. Allow yourself to experience the range of emotions that you are feeling. Eventually you will work your way through them and get back to a better place.
I think if you ask anyone diagnosed at stage IV that they will tell you that they should have been diagnosed earlier. I know I started seeing my doctor one year prior to my diagnosis for symptoms that were ultimately determined to be caused by my cancer. A sharp pain in my back, unbelievable fatigue, and finally, the cough. I used to think about all that a lot more earlier on, but I found that it takes too much strength to keep up that kind of anger. I finally let it go ... mostly.
This month marks 2 years and 2 months living with stage IV. I have 3 kids, ages 13, 10 and 6, and with only a few exceptions, I have been able to keep up with the sports, music lessons, and scouting, as well as the drama that comes with having a teenage girl in the house!! I feel so fortunate that for the most part my health is good. I exercise regularly, walking a few miles a day whenever I can, and I have a great cirlce of friends and family who keep me focused on living, not dying.
I hope that you will soon be feeling better.
Tracy
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AWESOME!!!!!!
Tracy
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Wonderful news!!!! I've been waiting for your post, praying that your results would be good.
It's only 6:55 am right now, but I'm open to drinking early. I think a mimosa would be good about now!
Tracy
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I've got my fingers and toes crossed too!!! Praying for the very best results on monday.
Tracy
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I got my latest scan results today and it appears that the cancer is still behaving itself. After almost sixteen weeks on this trial the cancer has not grown at all, and the small nodules appear to be cavitating. This means that I will continue on the seliciclib for another six weeks, that is, if I'm truly getting it and not the placebo.
At this point in time I believe that I'm getting the real thing, as never before have I had such stability. My results during my time on avastin and on alimta were always stability/a bit of growth. I do not believe that the cancer just suddenly stopped growing on its own.
I finally have all the side effects managed and the treatment has become quite tolerable. The biggest thing was getting off of the decadron. Nausea is a common side effect of this drug so I take decadron, zofran and ativan for prevention. The decadron keeps me awake for days and the sleep deprivation was just awful. I decided to see what would happen if I dropped it down to once a day, apparently, nothing. I felt fine, no nausea at all, so this time around I'm dropping the other dose too.
I celebrated my two year anniversary of my diagnosis on March 29, and it feels SO good to say that I'm now on year three.
Thanks for being here!
Tracy
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Here's a big WOOOHOOOOOO!!!!!!! coming your way.
I am so happy for you and your family. Sit back and enjoy the here and now, you deserve it.
Tracy
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Three Years
in HOPE
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Wonderful news Lilly!!!!