The beat goes on...

kikz
kikz Member Posts: 1,345 Member

Saw my onc today for regular appt which I almost cancelled since I had spoken to her after last CA 125.  I didn't cancel because I began having rashy areas on my arms and chest and itching almost everywhere else even with no sign of rash.  I also had been experiencing pain on the right side of my stomach in the waist area.  The pain is mild and although I remember feeling it occasionally before it has been fairly constant for the last two weeks.  It goes away then comes again.

Well, it is the area where the lymph node is.  Funny, I thought my tumors were higher up after viewing the two petscans.  I have never been good at anatomy.  She asked if my urine ws dark, like tea and I said no.  She checked my eyes for jaundice.  She also stated the rash and itching could be related.  She sent me for bloodwork and scheduled a petscan for Tuesday.  Once again I took it in stride because I was expecting it.  

I am pretty sure I will be starting chemo soon since the pain would indicate the tumor is causing a problem with my kidneys. 

I am relieved that my cousin although still in a rehab center because of her wound, is doing well.  She is finally in touch with reality again.  Her rehab is ten miles from home so it makes it easier to visit than the 51 miles I was driving.  Tomorrow I was supposed to take her to the wound center at the hospital in our town.  I was apprehensive because she has been in a hospital bed for a month.  I was afraid she would get hurt.  Plus they wanted me to take a wheelchair which I have trouble lifting.  I expressed my concerns but was assured help was available at both facilities.  I was telling my doctor about how difficult the last month has been and she asked if there wasn't someone else who can help out?  I said yes but I had told her son I would do what I could, as long as I could.  My onc said I need to take it easy and not stress, she actually told me that last July.  I told her I have felt good except fatigue.  On the days I was too tired I would not drive to Stanford.

So I called my cousin's daughter and explained I cannot do it.  I then drove to see my cousin and explained to her.  She said she felt bad that I had been doing so much.  I told her not to feel bad because I did what I wanted to do.  She did so much for me when I went through treatment.

So, ladies, that is the latest on my current journey.  Damn!  I just had my hair cut and highlighted.  I was working toward going blond for the first time in my life.  I may not have done it but now that will have to wait.

 

Karen 

Comments

  • Cafewoman53
    Cafewoman53 Member Posts: 735 Member
    Karen

    I am so sorry you have so much going on. Stress is so bad for us but we have to find a way to deal with everyday stresses and not let it make us sick .

    Could your rash and itching be shingles?  You and your cousin are lucky to have each other, there are other ways to support her other than physically driving her around.

    I am with you about the hair, my hair had finally grown enough for a real haircut. It was so cute then bam it's gone ! Well I got me a sassy blonde wig and the first time I wore it out a lady stopped me in the supermarket to tell me my hair was so pretty and where did I go to get it done, made my day. Did you know that you can get a wig from the American Cancer Society?  If you already got one from them you can get a new one if you are in treatment again. Go get one and make sure it is blonde!

    Colleen

  • Cafewoman53
    Cafewoman53 Member Posts: 735 Member
    My Hair...

    Me trying to make a teal Mohawk, it wouldn't stand up !

  • Cafewoman53
    Cafewoman53 Member Posts: 735 Member
    My Hair...

    double post

  • lovesanimals
    lovesanimals Member Posts: 1,366 Member

    My Hair...

    double post

    Hi Karen

    I'm so sorry for what you've been going through.  I was wondering if your rash and itching could be hives?  Lord knows you've been through the wringer with stress and I believe that hives can be stress-related.  Keep us posted on the outcome of your PET scan.  If you have to do chemo again, know that you can do it!  Your doctor will have a game plan that will kick your cancer's butt!  Hang in there and know that we are here to support you.

    Big hugs,

    Kelly

     

  • lovesanimals
    lovesanimals Member Posts: 1,366 Member

    My Hair...

    Me trying to make a teal Mohawk, it wouldn't stand up !

    Hi Colleen

    Great picture!

    Kelly

  • Alexandra
    Alexandra Member Posts: 1,308
    Dear Karen

    Just I quick note to say hi and to wish you the best. I admire what you do for your cousin, but don't be a hero; let the others pull their weight too.

    OTC blue gel with lanacane always helps my rashes and itching.

    (((Hugs))) Alexandra

  • Glad to be done
    Glad to be done Member Posts: 569

    Hi Karen

    I'm so sorry for what you've been going through.  I was wondering if your rash and itching could be hives?  Lord knows you've been through the wringer with stress and I believe that hives can be stress-related.  Keep us posted on the outcome of your PET scan.  If you have to do chemo again, know that you can do it!  Your doctor will have a game plan that will kick your cancer's butt!  Hang in there and know that we are here to support you.

    Big hugs,

    Kelly

     

    Hi Karen -
     
    I am so sorry

    Hi Karen -

     

    I am so sorry you are going through this again.  You can go blonde.  You can go long or short.  It is your choice and it is instant.   You know the routine.  One day at a time...   Remember ~ You have cancer...Cancer does NOT have you...  You are in my prayers.

     

    Eileen

  • kikz
    kikz Member Posts: 1,345 Member
    Test results

    indicate my levels are all within range which is good news. Onc recommended Claritin. I took one last night but am still itching so I am going to try a topical such as Alexandra suggested.  As far as it being shingles, I am not in the kind of pain people I know have had with it.  I did have a shingles shot when I turned 60.  I read on google that persistent itching is a sign of liver disease.  My tumors are in that area.  It is when too much bile goes into the bloodstream.  Again my levels are within range but the Creatine level is at the top of range.  This can indicate liver or kidney problems.  I would think she is concerned about kidneys since she asked about urine and checked my eyes for jaundice.

    I feel good today.  The pain is intermittent and is still mild.  I guess the worst part is the itching.

    About my hair.  Being bald was never an issue for me.  At our first meeting my surgeon said I would look different the next time he saw me; I would lose my hair.  I told him I didn't care if I was bald the rest of my life as long as I was able to live.  I only wore hats when it was cold and at night when I had stubble.  My scalp hurt against the pillow.  As with everything in life, people handle things their own way; the way that is best for them.  I didn't feel the need to cover my head and didn't want to get into the thing where if someone came over, I had to scramble to put on a hat or wig.  It was actually a freeing experience.  It gave me a sense of self empowernment.  I have always been shy and self concious, especially about my weight.  You can bet those feelings are long gone.

    Thank you ladies, as always for your support and concern.

     

    Karen     

  • Alexandra
    Alexandra Member Posts: 1,308
    kikz said:

    Test results

    indicate my levels are all within range which is good news. Onc recommended Claritin. I took one last night but am still itching so I am going to try a topical such as Alexandra suggested.  As far as it being shingles, I am not in the kind of pain people I know have had with it.  I did have a shingles shot when I turned 60.  I read on google that persistent itching is a sign of liver disease.  My tumors are in that area.  It is when too much bile goes into the bloodstream.  Again my levels are within range but the Creatine level is at the top of range.  This can indicate liver or kidney problems.  I would think she is concerned about kidneys since she asked about urine and checked my eyes for jaundice.

    I feel good today.  The pain is intermittent and is still mild.  I guess the worst part is the itching.

    About my hair.  Being bald was never an issue for me.  At our first meeting my surgeon said I would look different the next time he saw me; I would lose my hair.  I told him I didn't care if I was bald the rest of my life as long as I was able to live.  I only wore hats when it was cold and at night when I had stubble.  My scalp hurt against the pillow.  As with everything in life, people handle things their own way; the way that is best for them.  I didn't feel the need to cover my head and didn't want to get into the thing where if someone came over, I had to scramble to put on a hat or wig.  It was actually a freeing experience.  It gave me a sense of self empowernment.  I have always been shy and self concious, especially about my weight.  You can bet those feelings are long gone.

    Thank you ladies, as always for your support and concern.

     

    Karen     

    Test results

    Excellent news about the tests Karen.

    The itch could have a million reasons other than kidney disease. Most likely allergy to a new food, medication, pollen, etc. Or even anxiety.

    Since I started taking Metformin (daily 500mg x 2 Metformin was my own idea for recurrence prevention; my ONC refused to prescribe it, so I conned a script out of some random walk-in DR) I was getting "pressure" hives (in areas under bra band & straps, underwear band, etc.) and itching like crazy. Benadryl and Claritin did nothing other than put me to sleep. I had a bottle of blue gel with Lanacane that I had used for sunburn last summer and it helped within minutes.

     

  • lovesanimals
    lovesanimals Member Posts: 1,366 Member
    Alexandra said:

    Test results

    Excellent news about the tests Karen.

    The itch could have a million reasons other than kidney disease. Most likely allergy to a new food, medication, pollen, etc. Or even anxiety.

    Since I started taking Metformin (daily 500mg x 2 Metformin was my own idea for recurrence prevention; my ONC refused to prescribe it, so I conned a script out of some random walk-in DR) I was getting "pressure" hives (in areas under bra band & straps, underwear band, etc.) and itching like crazy. Benadryl and Claritin did nothing other than put me to sleep. I had a bottle of blue gel with Lanacane that I had used for sunburn last summer and it helped within minutes.

     

    Hi Karen

    That is terrific news about your tests!  I agree with Alexandra that your itching could be from a lot things unrelated to liver or kidney disease.  I know why you would think kidney disease though.  In our situation as cancer survivors, we always think the worst.    For temporary relief, you might want to take a cool bath; luckily the days are warming up.  If necessary, maybe your local pharmacist can give you some suggestions.

    Kelly

  • Alexandra
    Alexandra Member Posts: 1,308

    My Hair...

    Me trying to make a teal Mohawk, it wouldn't stand up !

    Colleen - I am so jealous of your mohawk!

    I wish I came up with this idea when I shaved my hair off before chemo.

  • Alexandra
    Alexandra Member Posts: 1,308
    Alexandra said:

    Test results

    Excellent news about the tests Karen.

    The itch could have a million reasons other than kidney disease. Most likely allergy to a new food, medication, pollen, etc. Or even anxiety.

    Since I started taking Metformin (daily 500mg x 2 Metformin was my own idea for recurrence prevention; my ONC refused to prescribe it, so I conned a script out of some random walk-in DR) I was getting "pressure" hives (in areas under bra band & straps, underwear band, etc.) and itching like crazy. Benadryl and Claritin did nothing other than put me to sleep. I had a bottle of blue gel with Lanacane that I had used for sunburn last summer and it helped within minutes.

     

    A few more ideas for itching

    - Calamine lotion

    - Warm baths blended with 2 cups ground oatmeal such as Aveeno Oatmeal Bath or home-ground oatmeal

    - Adding one half to one cup of baking soda to a warm bath

    (I used all of the above when my kid had chicken pox)

  • kimberly sue 63
    kimberly sue 63 Member Posts: 421 Member
    some chemos don't take your

    some chemos don't take your hair!!! hang in there. Kim