Long Time No See!

Djinnie
Djinnie Member Posts: 945
edited September 2014 in Kidney Cancer #1

Hey there,

I have not posted for a while, in fact looking at all the new members it is probably longer than I realized. I am so sad to see so many new names on here!

A few months back we sufferred a family trauma, it hit me rather hard and along with fighting cancer I just ran out of gas. Unfortunately I spiralled down into a black pit, and spent some considerable time searching for the light switch. The impact also caused a bit of a domino effect with the cancer problems and the Votrient side effects, and I ended up with a whole host of issues.

One problem was my hair loss increased, which is a little hard to get used to. When I am having a 'bad hair day' I am coming close to meaning that in the literal sense, as in singular, lol! I have a prescription for a wig now, so I'm looking forward to getting that.  Also having problems with the hand and foot syndrome, which is causing difficulty in walking. The hospital has issued me with jel pads, so all my shoes are well jelled now. I also have little mittens with pressure pads on for my hands, what a flipping  pallava!!

We are still trying to sort out my thyroid, since it took a seemingly ever extending sabbatical. Sadly it would appear I am allergic to the only meds available for hypothyroidism, so it's proving to be a bit of a tricky issue! 

Not all bad news though! My recent scan results show that there are no new tumours, and the long standing ones have not grown in the past three months, yeah!! Fortunately my liver has become a team player at last, so we have been able to increase the Votrient to 600mgs. I am looking forward to seeing if it can trigger a reduction response by Christmas. That would be the best Xmas present ever:)

Anyway! that's the end of my update!

 

 

Djinnie x

Comments

  • Phredswife
    Phredswife Member Posts: 162
    Hooray Djinnie is back!!!

    SmileYou have been really missed. I have been worried about how you were doing and am so glad you are ok. The place hasn't been the same without you!

    Hugs Melissa xoxo

  • Jan4you
    Jan4you Member Posts: 1,330 Member
    Oh dear, so sorry for ALL you

    Oh dear, so sorry for ALL you have been enduring. Seems you are putting self first, like it or not. I also cannot believe you are allergic to thyroid meds. What else now?? Enough!!

    Know that you are missed and thought of often. Sending you healing thoughts and warm wishes for continued improvement. Yeah for the news from your last scan!!

    Gentle Hugs, Jan

  • Srashedb
    Srashedb Member Posts: 482 Member
    Amazing

    I have never met you, have not been on this forum long and I don't have kidney cancer BUT seeing your post today was wonderfu.

    sorry for your family issues, depression and loss of hair; you are responding to the treatment and posting again.

    Great to see your post!

    Sarah

  • I am alive
    I am alive Member Posts: 315
    So glad to hear from you!

    I've been wondering how you are doing.  How wonderful that you tumors are stable. A shame about the hair loss - that would send me into a tail spin. Some SEs are easier on the psyche than others. And family trauma can do a number on our health in the best of times. Sounds like you've been to hell and back - thyroid, hand/foot syndrome, the black pit. So glad you clawed your way back! 

  • Suekub
    Suekub Member Posts: 137
    Welcome back

    Nice to have you back on here, I have been wondering how you have been doing and sorry that you have a rough time lately. Hopefully things will start to go your way soon. 

    Sue

     

  • Jojo61
    Jojo61 Member Posts: 1,309 Member
    Welcome back

    It is nice to see your lovely post here again! I am sorry for the difficult journey you have had, but you are here now, my friend.

    We all have missed you dearly.

    Big Hugs,

    Jojo

  • NanoSecond
    NanoSecond Member Posts: 653
    Hand-Foot Treatment

    Welcome back Djinnie.  I so sorry to hear what you have been dealing with.

    Here is something that has been reported on SmartPatients.com to work quite well against Hand-Foot Syndrome:

    http://xelodasideeffects.blogspot.com/2009/02/keeping-it-simple.html

  • foxhd
    foxhd Member Posts: 3,181 Member

    Hand-Foot Treatment

    Welcome back Djinnie.  I so sorry to hear what you have been dealing with.

    Here is something that has been reported on SmartPatients.com to work quite well against Hand-Foot Syndrome:

    http://xelodasideeffects.blogspot.com/2009/02/keeping-it-simple.html

    I am always

    thinking of you. I am sending good vibes constantly. Sometimes I wish that we could share each others load. I'd be happy taking some of your issues if it would help. Hang in DJ. We love you.

  • APny
    APny Member Posts: 1,995 Member
    foxhd said:

    I am always

    thinking of you. I am sending good vibes constantly. Sometimes I wish that we could share each others load. I'd be happy taking some of your issues if it would help. Hang in DJ. We love you.

    I have been thinking of you

    I have been thinking of you and wondering how you are doing. I'm sorry to hear about the difficulties you have been dealing with but happy that there are no new growths and no change for the worse in the existing ones. I hope you continue to improve and am praying for a wonderful Christmas present for you healthwise and in every other way too.

  • a_oaklee
    a_oaklee Member Posts: 566 Member
    Hi Dj

    I'm so glad you popped in here and let us know how you are doing.  I've been thinking about you.  Sorry to hear about your struggle with family tragedy and health problems exacerbating.  Im so glad that you are now feeling better.   I would like you to know that when you were in that pit of despair....we are here for you.  Through the good times and bad times reach out here or through private message.  

    Re thyroid replacement.  A relative of mine uses topical Armour thyroid replacement.  it's old school, before the synthetics.  My endocrinologist doesnt want to prescribe it for me, but I understand for some people they greatly prefer it.  

    Best wishes.  Annie

  • GSRon
    GSRon Member Posts: 1,303 Member
    a_oaklee said:

    Hi Dj

    I'm so glad you popped in here and let us know how you are doing.  I've been thinking about you.  Sorry to hear about your struggle with family tragedy and health problems exacerbating.  Im so glad that you are now feeling better.   I would like you to know that when you were in that pit of despair....we are here for you.  Through the good times and bad times reach out here or through private message.  

    Re thyroid replacement.  A relative of mine uses topical Armour thyroid replacement.  it's old school, before the synthetics.  My endocrinologist doesnt want to prescribe it for me, but I understand for some people they greatly prefer it.  

    Best wishes.  Annie

    DJ, glad you are back..!  I

    DJ, glad you are back..!  I understand family stuff.. well a little bit..   As for running out of gas.. well.. don't hang around me... no shortage here... Oooops.... Yell

    Ron

  • NewDay
    NewDay Member Posts: 272
    GSRon said:

    DJ, glad you are back..!  I

    DJ, glad you are back..!  I understand family stuff.. well a little bit..   As for running out of gas.. well.. don't hang around me... no shortage here... Oooops.... Yell

    Ron

    Great to see you

     Hi DJinnie,

    Great to see you here.  I haven’t been around here much myself lately, but I check in occasionally. 

    I have lost a lot of hair, but not to the point that you have.  I wonder how  much of that is because of your thyroid rather than the Votrient.  I was on Votrient a few weeks and it was working, but I had to come off of it because of elevated liver enzymes.  At first, my doctor was going to just lower the dosage, but instead switched me to Inlyta. I also got hand-foot syndrome on it so I can relate to that.  Your QOL really takes a hit when you have trouble just walking around.  My doctor had me stop the med for a week and it did clear up.  He changed my dosage to 6 weeks on and 1 week off. I hope that won’t be a mistake.  I have scans coming up so we’ll see.

    I, too, have been having thyroid problems.  First I’m hypothyroid, then hyper, then hypo, then hyper….  I’ve recently started synthroid so we will see if that helps.  At least it should help me figure out how much of the fatigue is from the Inlyta and how much is the thyroid.

    I’m so glad you got positive results from your scans.  I was refreshing my memory reading your profile.  I’m wondering if you ever got the “proper holiday”?  You certainly deserve one.

    Take care,

    Kathy

  • Djinnie
    Djinnie Member Posts: 945
    NewDay said:

    Great to see you

     Hi DJinnie,

    Great to see you here.  I haven’t been around here much myself lately, but I check in occasionally. 

    I have lost a lot of hair, but not to the point that you have.  I wonder how  much of that is because of your thyroid rather than the Votrient.  I was on Votrient a few weeks and it was working, but I had to come off of it because of elevated liver enzymes.  At first, my doctor was going to just lower the dosage, but instead switched me to Inlyta. I also got hand-foot syndrome on it so I can relate to that.  Your QOL really takes a hit when you have trouble just walking around.  My doctor had me stop the med for a week and it did clear up.  He changed my dosage to 6 weeks on and 1 week off. I hope that won’t be a mistake.  I have scans coming up so we’ll see.

    I, too, have been having thyroid problems.  First I’m hypothyroid, then hyper, then hypo, then hyper….  I’ve recently started synthroid so we will see if that helps.  At least it should help me figure out how much of the fatigue is from the Inlyta and how much is the thyroid.

    I’m so glad you got positive results from your scans.  I was refreshing my memory reading your profile.  I’m wondering if you ever got the “proper holiday”?  You certainly deserve one.

    Take care,

    Kathy

    Thank you!

    Many thank to all of you for your kind supportive comments. It is so comforting to talk to you all again!

    Thanks Neil for the link to the Smart Patients info. The hand and foot syndrome has proved to be more than I bargained for. Anything that can help to relieve the ongoing pain would be very welcome!

    Fox you are so kind, I really appreciate your gesture and coming from someone who has had more than enough on his plate as it is. Your good vibes are very welcome though, I can certainly put them to good use:)

    Annie thanks for support and the information. I have tried to get hold of a supplier of Armour but is appears to be no longer available. My family and friends in the UK are trying to track some down. I have a feeling it has been banned, it would seem that although it had been relied upon for donkey's years it is now regarded as unsafe! Typical! they mean unprofitable more like! The Doctors will have to find me something though as the alternative would be a little dire!

    Kathy I too had elevated enzymes on the Votrient, to the point that we were looking to change meds. It was then decided that I would hold at 200mg until things had stabilised and then do the same on 400mg. My liver came up trumps eventually so I am hoping it will come through for me on the 600mg. The thyroid issue is a delicate problem to solve, who new that such a little gland had so much control over the functions of the body. I do hope everything settles down with yours soon. I am also having difficulty swallowing, and occasionally breathing, they believe it is caused by the swollen lymph close to my windpipe and gullet. However it could also be my thyroid, it seems pretty much pot luck!

    I did get my break, we went to Italy, seems such a long time ago now though. You are so right we could do with another one I think:)

    You all take care, and Ronnie I would take something for that gas if I were you!

     Djinnie xx