Just wanted to update you guys

Lilmiss82
Lilmiss82 Member Posts: 257 Member
in Colorectal Cancer #1
Ok!! Life is pretty crazy these days. Mostly filled with good things happening: the bank has agreed to modify our loan so no lossing my house, won a lawsuit (can't talk about it at all but I didn't think I had a chance HAHA ) my husband and I have been going to couples theraphy to try and over come our faults, looking for a surrogate to start a family( harvested embryos before treatment and I know that some many feel I should be cautious since I'm a stage IV but my husband and I have talked about this in great detail and no matter what happens to me we want to bring a child into this world -it's the greatest gift one could ever hope for, I am also house hunting ( may have a larger family soon so I want a good home for them) and in regards to treatment Ct Scan is set for FRIDAY(please send some good thoughts/vibes/prayers/ sparks basically anything you've got) then depending on results I'm gonna see that famous Dr.Lenz on June 27th. I'm doing 5-fu every other week and it's been tough- more so than FOLFOX!! I'm really sensitive to 5-fu to the point that I struggle daily -my hands are peeling and very painfull, it gets hard to walk around since my feet feel that they are gonna rip open, the runs with severe abdominal pain can't even leave my house for about 5 days after disconnect and my hair falling out by the handfuls- it didn't fall out like this on FOLFOX. You guys know how the rest goes but overall I feel like I'm gonna be ok:)I will post with scan result as soon as I get them but in the mean time please keep me in your thoughts -getting the famous scanxiety big time :) Melissa

Comments

  • lisa42
    lisa42 Member Posts: 3,625 Member
    #2
    Hi Melissa
    Hi Melissa,

    Thanks for the update- wow, you do have a lot going on!
    I'm sorry you're dealing with such severe side effects on the 5FU. When you got oxaliplatin, you would have gotten the 5FU with it then, so that's weird that you're suffering so much now with just the 5FU alone. It may be due to build up of it in your system. I recently changed from Xeloda back to 5Fu because I had such back hand/foot side effects from the Xeloda, and I really don't have much of it from 5FU. How I hate the pump, but it did actually lessen my side effects. Since I've changed back though, my hair is coming out and it looks awful right now- I didn't get that with Xeloda. Maybe changing from 5FU to Xeloda would be better for you- I don't know. Have you ever been on it before? It might be worth asking your onc or Dr. Lenz when you go. Be aware- as knowledgeable as Dr. Lenz is, he is difficult to understand (talks w/ a German accent and can get loud and excitable when he speaks). I've been to him twice now on consultations. The first time, I had the last appt of the day & maybe he was just tired, but he really scared me. I took my notebook out to write down notes and he yelled at me to pay attention and put the notebook away! He had an angry face when he said it too. I then stammered that I wanted to take notes so I'd remember everything when I got home. He answered that he was writing down what he was saying and I could take that home. The problem was that I couldn't read any of his writing afterwards and then had to call the next day to speak to his nurse to clarify a few things. The second time I saw him, he wasn't that way at all- he was very nice, answered all my questions, and was very helpful- even joked with me a bit. So, hopefully you'll catch him on a good day- but just preparing you in case not. Even so, I would still go back to him, as his advice was very helpful and he's so knowledgeable, plus he has access to so many clinical trials there at Norris/USC. My onc didn't know what to do for me & he went with Dr. Lenz's advice, which was good for me because I don't know what my onc would have done for me otherwise. So best wishes with all that coming up for you!
    Wow- exciting about the possible surrogate, but I, myself can't even imagine going through that with the cancer worries. With a surrogate, you wouldn't have to worry about what if you needed chemo during pregnancy or while breastfeeding- so that would be less to have to worry about. Where there's a will, there's a way! God can definitely take care of those things!

    Hugs to you, Melissa- thanks for taking the time to give us your update. As you know, people here worry when they don't hear from board members for awhile.

    Fondly,
    Lisa :)
  • pepebcn
    pepebcn Member Posts: 6,331 Member
    #3
    lisa42 said:

    Hi Melissa
    Hi Melissa,

    Thanks for the update- wow, you do have a lot going on!
    I'm sorry you're dealing with such severe side effects on the 5FU. When you got oxaliplatin, you would have gotten the 5FU with it then, so that's weird that you're suffering so much now with just the 5FU alone. It may be due to build up of it in your system. I recently changed from Xeloda back to 5Fu because I had such back hand/foot side effects from the Xeloda, and I really don't have much of it from 5FU. How I hate the pump, but it did actually lessen my side effects. Since I've changed back though, my hair is coming out and it looks awful right now- I didn't get that with Xeloda. Maybe changing from 5FU to Xeloda would be better for you- I don't know. Have you ever been on it before? It might be worth asking your onc or Dr. Lenz when you go. Be aware- as knowledgeable as Dr. Lenz is, he is difficult to understand (talks w/ a German accent and can get loud and excitable when he speaks). I've been to him twice now on consultations. The first time, I had the last appt of the day & maybe he was just tired, but he really scared me. I took my notebook out to write down notes and he yelled at me to pay attention and put the notebook away! He had an angry face when he said it too. I then stammered that I wanted to take notes so I'd remember everything when I got home. He answered that he was writing down what he was saying and I could take that home. The problem was that I couldn't read any of his writing afterwards and then had to call the next day to speak to his nurse to clarify a few things. The second time I saw him, he wasn't that way at all- he was very nice, answered all my questions, and was very helpful- even joked with me a bit. So, hopefully you'll catch him on a good day- but just preparing you in case not. Even so, I would still go back to him, as his advice was very helpful and he's so knowledgeable, plus he has access to so many clinical trials there at Norris/USC. My onc didn't know what to do for me & he went with Dr. Lenz's advice, which was good for me because I don't know what my onc would have done for me otherwise. So best wishes with all that coming up for you!
    Wow- exciting about the possible surrogate, but I, myself can't even imagine going through that with the cancer worries. With a surrogate, you wouldn't have to worry about what if you needed chemo during pregnancy or while breastfeeding- so that would be less to have to worry about. Where there's a will, there's a way! God can definitely take care of those things!

    Hugs to you, Melissa- thanks for taking the time to give us your update. As you know, people here worry when they don't hear from board members for awhile.

    Fondly,
    Lisa :)

    Just want to send you all my best artillery , hugs, vibes,
    prayers and wishes! .
    Hope a good scan result!
    hugs!
  • Lilmiss82
    Lilmiss82 Member Posts: 257 Member
    #4
    lisa42 said:

    Hi Melissa
    Hi Melissa,

    Thanks for the update- wow, you do have a lot going on!
    I'm sorry you're dealing with such severe side effects on the 5FU. When you got oxaliplatin, you would have gotten the 5FU with it then, so that's weird that you're suffering so much now with just the 5FU alone. It may be due to build up of it in your system. I recently changed from Xeloda back to 5Fu because I had such back hand/foot side effects from the Xeloda, and I really don't have much of it from 5FU. How I hate the pump, but it did actually lessen my side effects. Since I've changed back though, my hair is coming out and it looks awful right now- I didn't get that with Xeloda. Maybe changing from 5FU to Xeloda would be better for you- I don't know. Have you ever been on it before? It might be worth asking your onc or Dr. Lenz when you go. Be aware- as knowledgeable as Dr. Lenz is, he is difficult to understand (talks w/ a German accent and can get loud and excitable when he speaks). I've been to him twice now on consultations. The first time, I had the last appt of the day & maybe he was just tired, but he really scared me. I took my notebook out to write down notes and he yelled at me to pay attention and put the notebook away! He had an angry face when he said it too. I then stammered that I wanted to take notes so I'd remember everything when I got home. He answered that he was writing down what he was saying and I could take that home. The problem was that I couldn't read any of his writing afterwards and then had to call the next day to speak to his nurse to clarify a few things. The second time I saw him, he wasn't that way at all- he was very nice, answered all my questions, and was very helpful- even joked with me a bit. So, hopefully you'll catch him on a good day- but just preparing you in case not. Even so, I would still go back to him, as his advice was very helpful and he's so knowledgeable, plus he has access to so many clinical trials there at Norris/USC. My onc didn't know what to do for me & he went with Dr. Lenz's advice, which was good for me because I don't know what my onc would have done for me otherwise. So best wishes with all that coming up for you!
    Wow- exciting about the possible surrogate, but I, myself can't even imagine going through that with the cancer worries. With a surrogate, you wouldn't have to worry about what if you needed chemo during pregnancy or while breastfeeding- so that would be less to have to worry about. Where there's a will, there's a way! God can definitely take care of those things!

    Hugs to you, Melissa- thanks for taking the time to give us your update. As you know, people here worry when they don't hear from board members for awhile.

    Fondly,
    Lisa :)

    Thank You Lisa
    I tend to coward away when I hear bad news about people I feel close to on the board. Not the best way to handle things I know but it's just so hard. Anyways, thank you for your response. The visit to Dr. Lenz shall be interesting :) I see him on a Monday so hopefully he'll be in a good mood since it is early in the week. In regards to the 5-fu I know that Folfox included it but for some reason when I'm on it alone it really messes me up. When I did the 6 weeks of continuous 5-fu during radiation my doctors told me I have a complete sensitivity to it and had to reduce the dose dramatically. It's really weird. Amyways, Lisa I think about you very often and admire you greatly. Let's continue to win this fight :)
  • Lilmiss82
    Lilmiss82 Member Posts: 257 Member
    #5
    Lilmiss82 said:

    Thank You Lisa
    I tend to coward away when I hear bad news about people I feel close to on the board. Not the best way to handle things I know but it's just so hard. Anyways, thank you for your response. The visit to Dr. Lenz shall be interesting :) I see him on a Monday so hopefully he'll be in a good mood since it is early in the week. In regards to the 5-fu I know that Folfox included it but for some reason when I'm on it alone it really messes me up. When I did the 6 weeks of continuous 5-fu during radiation my doctors told me I have a complete sensitivity to it and had to reduce the dose dramatically. It's really weird. Amyways, Lisa I think about you very often and admire you greatly. Let's continue to win this fight :)

    Thanks Pepe
    How are you doing?? I read you post often and I love how you really get everyone to participate in your post:) Keep it up it's great reading for me
  • idlehunters
    idlehunters Member Posts: 1,787 Member
    #6
    Lilmiss82 said:

    Thanks Pepe
    How are you doing?? I read you post often and I love how you really get everyone to participate in your post:) Keep it up it's great reading for me

    Hey Melissa!
    I agree with Lisa...your plate is full..wow... I am so impressed with the baby situation...you go girl...only live once...might as well do all you can!!! Will be sending good vibes, prayers...and anything else I can muster up to make it an awesome scan. Keep standing strong...you rock!

    Jennie
  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
    #7
    Update
    Thank you for the update. Glad that you got a mortgage relief, our daughter got one too. Just seems like this has to happen with mortgages. Wonderful about the possibility of a new baby. Praying that all comes out well with the CT scan. Sorry about the side effects of your chemo now, and hoping that you get some relief. Thinking of you.

    Kim
  • plh4gail
    plh4gail Member Posts: 1,238 Member
    #8
    Hi Melissa...sending you soo
    Hi Melissa...sending you soo many good wishes..prayers and thoughts and all that comes along with it! You're an amazing woman!!!

    Love ya, Gail
  • Kathleen808
    Kathleen808 Member Posts: 2,342 Member
    #9
    Melissa
    Wow Melissa,
    You have a lot going on. It sounds like things are moving in a good direction. Best to you when you see Dr Lenz. He consults on ****'s treatment. **** has seen him about 5 times and he has given him good advice.

    Take care.

    Aloha,
    Kathleen
  • KathiM
    KathiM Member Posts: 8,028 Member
    #10
    Whew! you sound so busy!!!
    I know all about internal clocks and wanting to have kids young. It's VERY exciting!!! And, I always multitask...it keeps me out of trouble...*smile*.

    The only mom thing that I might say is...have you discussed with hubby how he feels about raising a child on his own? And taking care of you, should you become ill at the same time?It is something to think about. I know in my situation, single parent with 2 special needs kids to raise, the fear of what would happen to them if I got too sick to care for them, or passed, was always with me....

    BIG hugs, Kathi
  • dorookie
    dorookie Member Posts: 1,731 Member
    #11
    Sending Prayers
    for great scan results...Good Luck with everything else...

    HUGS
    Beth
  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900 Member
    #12
    the new child is a wonderful dream
    deasr melissa,

    i hope the scan is clear and that your dreams comes true.

    hugs,
    pete
  • Sundanceh
    Sundanceh Member Posts: 4,392 Member
    #13
    Super Woman.....
    Melissa

    Marriage is one of the toughest things to hold together, and that's without cancer even. Throw in a dx and it turns up the heat. Glad you guys are trying to work it out.

    5fu is hard on the hands and especially the feet - I hope you are using some Bag Balm or some type of udder cream for this. I'm sorry about your hair too - mine thinned alot on top and less on the sides and back, but did not fall out. It's difficult to watch that stuff happening to you.

    Congrats on the mortgage - congrats on the lawsuit - congrats on the mama thing - and best of luck on your scans:)

    -Rock

Discussion Boards