The Leukemia & Lymphoma Society - Fighting Blood Cancers
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  • 270. Re: Got room for another newbie?
    moogaw Registered Users
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    Hi Lori,

     

    They did a spinal tap when they initially found the brain tumor to see if there was any lymphoma in the fluid. They were thinking if they found lymphoma there, they would not have to do the surgery to biopsy it, but it came back clean.  That's not to say that it has not migrated into the fluid, so that's a good idea to discuss with her doctor.  Thanks for the suggestions.  I'll be doing another reply on the main line with what we've found out recently.

     

    Ed

  • 271. Re: Got room for another newbie?
    moogaw Registered Users
    Currently Being Moderated

    Hi Everyone,

     

    I know it's been a while since I updated so there's quite a bit to tell you. 

     

    First, we were able to cross two things off of Cindy's "bucket list" recently.  Both of our parents and grandparents worked for the railroad back east, but we'd never traveled on a train.  So a couple of weeks ago, I booked us on Amtrak from Denver to Grand Junction, CO and spent three nights there.  We were able to take day trips on Tue and Wed before coming back on the train Thursday.  One of the trips was to Ouray CO (number two on the bucket list) and another to Arches National Monument in Utah.

    Cindy was actually supposed to have chemo the week before out trip ,but because of low Potassium and platelets they had to postpone it until the week after we got back.  Unfortunately, between the time we got back on Thurs and Saturday, she started exhibiting neurological problems again.  We ended up increasing the decadron dose again, so she's back on the full dose daily.  They did a brain MRI on Monday and found swelling around the tumor in the brain.  The increased decadron has helped with the neurological problems, but she has not totally recovered.

     

    Last Saturday, we went to Denver for the 2nd annual Lukemia/Lymphoma Society conference at Anshutz Medical Center.  We were able to attend sessions on transplantation, lymphoma, and "Fighting Cancer with a Fork" - eating better, especially during treatment..  We ran into Dr. Myint (transplant doctor) between sessions and he remarked about how good CIndy was looking.

     

    On Tues, we got a call from Dr Myint's nurse wanting to schedule an appointment with him this week.  We kind of thought maybe he wanted to discuss getting started on the transplant procedure, however, when we met with him yesterday afternoon, he was not as optomistic as before about doing the transplant.  He indicated that if we did the transplant using her stem cells, there's a high probability of relapse, probably soon after the transplant.

     

    On the other hand, if we used doner cells, there's a 20% chance that she would not survive the treatment, and 50/50 fro making it one year after the transplant.  He offered the third option of not proceeding with the transplant at all.  If the tumor in the brain is still active, which the swelling would seem to imply, then most likely, she would only survive a few more months.

     

    So we're praying and discussing the options, and will talk more with Dr Murphy on Wednesday to see what else we can look into.  Needless to say, this is not what we were hoping to hear, but we're still trusting in God to guide us, give us peace, and strength for whatever lies ahead. 

     

    Ed

  • 272. Re: Got room for another newbie?
    jgold Registered Users
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    Ed:

     

    I am so sorry to hear this, my prayers and thoughts are with both of you.  Give Cindy a hug from all of us.

     

    Jim

  • 273. Re: Got room for another newbie?
    JudyColorado Registered Users
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    Hello Ed and Cindy - any updates?  How is Cindy doing?  And how are you and the rest of the family Ed?  I think of you both every day - sincerely, Judy

  • 274. Re: Got room for another newbie?
    moogaw Registered Users
    Currently Being Moderated

    Hi Everyone.  Here's the latest news we have.  Sorry it's taken so long to post.

     

    We met with CIndy's oncologist this week (Monday) and covered the results of her PET scan after three rounds of Gemzar/Oxiliplatin (GEMOX) and the results were very good.  The tumor in her gluteous was completely gone and the original tumor in her abdomen had shrunk further.  These were all very encouraging.  He also has reconsidered treatment on the tumor in the brain which still seems to be growing. 

     

    Next week, if her blood levels are OK, he's going to admit her to Penrose Main again and do the Methotrexate treatment which will get through the blood-brain barrier and hopefully begin to reduce the tumor there. I've been noticing a steady deterioration in her mental state over the past several weeks, and she has an especially hard time early this morning with confusion. I'm not sure if it was caused by a dream she was having which carried over as she woke up, or if it was something else, but she was very emotionally upset and saying things that did not make sense.

     

    We praying that this treatment will be effective and will begin a quick reduction in the two tumors in the brain and relieve the pressure that they're causing along with the confusion brought on by the pressure.

     

    We also met with the oncologist in Denver a couple of weeks ago, and based on the number and location of the tumors, along with the issues she had from the first treatment of methotrexate, he does not feel she's a good candidate for a stem cell transplant.  He's sure that we would not be able to use her own stem cells without have a relapse soon after.  He's also thinking that the risk of putting her through a donor transplant would be too great.  20% do not survive the transplant process and 50% do not survive the first year.  That was a bit discouraging, but after finding that out, our oncologist here in Colorado Springs said we'd just change the focus of the treatment from "getting her to transplant" to "doing what we can to get her into remission".  We're not sure right now what else can be done to treat the brain tumor if the Methotrexate does not do the job, but I'll be talking with him more about that on Tues.

     

    I'm also still proceeding with trying to get MD Anderson involved to see if they have any different treatment options.  There is another chemo drug that comes in pill form that gets through the blood brain barrier, but apparently it's not FDA approved yet so insurance won't cover it.  Apparently it's also very expensive.  I think since MD Anderson is a research facility, they have access to it, but our oncologist here does not.

     

    Thanks again for your continued prayers and words of encouragement.  Cindy gets on and reads them all even though she's not been able to post. I'm looking forward to the day she can start writing some messages again.

     

    Ed

  • 275. Re: Got room for another newbie?
    kgirl Registered Users
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    What wonderful and encouraging news!!!  I'm so looking forward to more of the same.  It will be great to hear from Cindy directly when she is able, and thank you Ed for keeping us  up to date.

     

    Love, prayers and blessings, 

     

    Barb

  • 276. Re: Got room for another newbie?
    FRAN641 Registered Users
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    Ed, it so wonderful that you keep all of us updated  on Cindy's progress.  We want to encourage you and her as much as we are able to through this little box. 

     

    Give Cindy my love and know that I keep your family in my prayers. 

     

    XO Fran

  • 277. Re: Got room for another newbie?
    JudyColorado Registered Users
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    Cindy and Ed - good to hear you have a plan of action and I hope that goes easy and successfully! And good to hear you have MD Anderson in the loop - they're on the cutting edge of much research.  Re: your post a few weeks ago...I live in Grand Junction ~ and wish I could have met you both when you got off the train here!  Not the nicest depot - is it?   (We hope the new owners refurbish)  Thanks for the update - both of you are in my prayers, every day.  Sincerely - Judy

  • 278. Re: Got room for another newbie?
    moogaw Registered Users
    Currently Being Moderated

    Cindy came into the hospital on Wed to begin the Methotrexate infusion.  It lasted 24 hours and finished on Thurs night about 9:00.  The last couple of hours were pretty rough.  For some reason, she got pretty violent and they had to give her a couple of things to relax and calm her down.  She went to sleep pretty quickly and when I checked the next morning, they had gotten her up a couple of times during the night to go to the bathroom and there was no need for any other medication.

     

    When they woke her up again, she was completely lucid and able to carry on a normal conversation with me.  I was pretty hopeful that things had turned the corner at that point.  She said she was hungry and wanted a breakfast burrito and Starbucks coffee, so I went out for a little bit to get them.  When I came back, I could tell the confusion was starting up again, and as the day went on she got more confused and more agitated.  The had to give her another dose of the medicine to calm her down.

     

    Friday and Saturday she was still pretty confused but she did recognize people who come to visit her.   Today she was more responsive again and able to pretty much respond to questions and sort of carry on a conversation.  She even seems to be getting better as the day goes on.  Her methotrexate level is down below the 0.1 level so they are releasing her today.  I think when she gets home in a familiar environment again, things will continue to improve. 

     

    We need to see her oncologist this week and see what the next steps will be, since this seems to have worked against the brain tumor.  The doctor covering the floor told me the typical regimen for this treatment is 3-4 infusions one month apart. 

     

    Ed

  • 279. Re: Got room for another newbie?
    FRAN641 Registered Users
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    Thanks Ed for the update.  I continue to keep both of you in my prayers.  It must be hard to  get any rest while all of this is going on. 

     

    Take care of yourself too.  Give Cindy a cyber hug from me...

     

    xo Fran

  • 280. Re: Got room for another newbie?
    kgirl Registered Users
    Currently Being Moderated

    I'm praying Cindy gets home and comfy.  You guys have fought a long, hard battle and you both need and deserve a rest, respite, remission.

     

    Hoping with all I am you get there, and soon.

     

    Love, prayers and hugs.

     

    Barb

  • 281. Re: Got room for another newbie?
    jgold Registered Users
    Currently Being Moderated

    Ed:

     

    Thank you for the update, hopefully all of you will see steady improvement from here on out, send Cindy a hug from all of us.

     

    Jim

  • 282. Re: Got room for another newbie?
    moogaw Registered Users
    Currently Being Moderated

    So after we got Cindy home on Sunday, her mental capacity began deminishing again and has gotten to the point where she doesn't really understand what's being said, and can't follow simple instructions.  I've been trying to get her to swallow her pills, but as soon as I put them in her mouth, she begins chewing them, and I'm guessing some of them taste pretty bad.

     

    We saw Dr Murphy this morning and get the results of her latest blood work.  He said all her levels look good, but I think he was a little surprised at how much confusion we're dealong with. Actually a LOT of confusion. He said we need to give the chemo at least a week from the time of the infusion, so that would be Thurs or Friday.  I'm hoping we'll see some improvement by the weekend.  The methotrexate is out of the blood, but still working at cellular level.  It works for one to two weeks, so there's still a chance that it will shrink the tumor.  We're also wondering if there's more swelling because of the chemo attacking the tumor.  Just so many unknowns at this point.

     

    He's also setting up some in-home care to help out with her.  We have an appointment on Thurs to go over what they can do, review her meds, etc.  It's been a bit challenging lately, but still manageable. 

     

    We're still praying for healing from God on this side of eternity and trusting in His will and His plan.  He's brought her a long way so far, and there have many times when things did not look good, but the power of prayer always came through.  We appreciate all of you that have come alongside in ministry, and thoughts and prayers.

     

    Ed

  • 283. Re: Got room for another newbie?
    kgirl Registered Users
    Currently Being Moderated

    Ed, your faith,  prayers and attentiveness along with Cindy's courage and fight have brought you a long way.  Having some help with Cindy's needs will give you a bit of a break and time to re-group and gather your strength....your commitment is absolute, but there can be times when the wear is a hard taskmaster.

     

    God Bless, watch over, and hold you both in his arms.

     

    Love always,

     

    Barb


  • 284. Re: Got room for another newbie?
    JudyColorado Registered Users
    Currently Being Moderated

    Thanks for the update Ed.  I believe you are right - the chemo is working and attacking the tumors!  And its a good thing to bring in some help.  While you've been quite the soldier through all this, a little assistance is well deserved.  I hope you both have a calm, healing memorial weekend.  And know there are daily prayers for your family.  Sincerely - Judy

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