Cancer Support and Caregivers Who Are Trail Blazers!

[Novelafemme]

the cold foot bath was something we read on the internet and thought it sounded fairly accurate. and it actually helped!

[Dominique]

Originally Posted by CatalinaRose

the cold foot bath was something we read on the internet and thought it sounded fairly accurate. and it actually helped!

Hi CatalinaRose.......

I'm certainly not saying it doesn't work....it doesn't work for me. Cold accelerates neurapoathy for ME! Even if I am pretty warm, i/e like summer time warm...and walk into a/c....that will set it off. Dapper was saying cold sets his off too.

It seems to be different for every one.

[JustJo]

Originally Posted by Yellow band

Hi CatalinaRose.......

I'm certainly not saying it doesn't work....it doesn't work for me. Cold accelerates neurapoathy for ME! Even if I am pretty warm, i/e like summer time warm...and walk into a/c....that will set it off. Dapper was saying cold sets his off too.

It seems to be different for every one.

I have a touch of neuropathy too (as well as periodic foot cramps so strong they'll bend my toes backwards, not fun)...from diabetes...and cold triggers it horribly. Warmth and massage help immensely.

[Dominique]

Originally Posted by JustJo

I have a touch of neuropathy too (as well as periodic foot cramps so strong they'll bend my toes backwards, not fun)...from diabetes...and cold triggers it horribly. Warmth and massage help immensely.

I have neuropathy from frostbite (so we are clear) They did microvascular surgery to seperate the good tissue from the bad. In fact, this is similar to how they treat the advanced diabetic cases. I was in treatment with and in PT with the diabetics. They told me neuropathy can be like fire (the cold water would make sense) it can be stinging and numbness. Sometimes my foot feels like a piece of wood (?) I totally understand why my feet would be subject to neuorpathy, but I don't understand my hands. They were not burn't as baddly as my feet and required no surgery. I buy alot of hand warmers in the summer (for use in the winter)....we are not suppose to use them! I squeeze them outside my gloves, and toss them back and forth between my hands. ~ remember the game, hot potatoe~

My Dr. suggested I wear therma-care heat wraps on my ankles if I am going to be outside. This will call for blood from your heart, and is such a
low dose request, it will not burn us.....it works too. (expensive remedy).

[deb_U_taunt]

Originally Posted by DapperButch

Just a comment on the B Vitamins. I took a B complex to help boost my immune system during chemo. My docs have now told me that FOR ME taking B1, B2 could encourage any present cancer cells to grow, so I had to stop that supplement. I take a multi vitamin that doc manufactures for cancer survivors (which includes Bs) and B6 (and I need to add B12) in addition.

I don't know if the B1 B2 discouragement is based on the type of cancer I had, or what.

I was told the same. What is the name of the multivitamin you are taking now? I would like to start taking vitamins again.

[deb_U_taunt]

Originally Posted by Yellow band

Hi CatalinaRose.......

I'm certainly not saying it doesn't work....it doesn't work for me. Cold accelerates neurapoathy for ME! Even if I am pretty warm, i/e like summer time warm...and walk into a/c....that will set it off. Dapper was saying cold sets his off too.

It seems to be different for every one.

No cold for me either. I get cold and I just ache. Massage and heat for me. I am hoping that the pain gets better soon. I can't stand or walk for long, but it hasn't been long since my last chemo.

[deb_U_taunt]

Tomorrow I start daily radiation for 6 weeks. I keep hearing its not so bad, it just makes ya tired. I am still nervous.

[Novelafemme]

Originally Posted by Debby

Tomorrow I start daily radiation for 6 weeks. I keep hearing its not so bad, it just makes ya tired. I am still nervous.

{{{Debby}}} No radiation here but my sister and bf both had it as part of their thyroid treatment protocols. We are having dinner with a chemo buddy on Saturday and she did radiation before starting chemo and said she really didn't notice any side effects at all.

I will say a prayer for you that all goes well. <3

[JustJo]

Originally Posted by Debby

Tomorrow I start daily radiation for 6 weeks. I keep hearing its not so bad, it just makes ya tired. I am still nervous.

Big hugs to you Debby....I hope it all goes well.

Wanted to come in and give you all an update....

Mom is home (I know....surprise!), with lots of help including a visiting nurse daily, a CNA/home aide for 3 or 4 hours and a friend spending most of the rest of the time. She's glad to be out of the hospital after spending virtually the whole summer there...and even though it's temporary.

She's still waiting out the timeframe for the Avastin to clear her system...once it does they'll go look and see what this other mass is and make a determination about next steps. If no other procedure is needed, she'll come down to me in Florida at that point. If another surgery is needed, then she'll be back in the hospital for that and until she recovers.

They cut her loose since she was able to demonstrate the ability to manage her own TPN (which is in a backpack arrangement), and they're monitoring her blood pressure and hydration very closely. Her weight is up to 112....still very thin, but much better than the 96 in her clothes that got her admitted last time. And she's eating....all soft foods and in small quantities....but she's handling soups, yogurt, cooked cereals, soft fruit, etc.

In the meantime, chemo continues every 2 weeks, and will through the rest of the year.

She's decided to sell her house, and is home talking to realtors and boxing up things she wants to send to me, my sister and our kids. I'm glad she's come to this herself rather than being hustled into it by my sister....and she feels good about it rather than pressured and rushed. Her decision, come to with counseling....is that the remaining item on her "bucket list" is that she's always wanted to live in NYC, have a little apartment, and enjoy all of the cultural "stuff" that she enjoys so much when we've been there for short periods. So....assuming she recovers....she may transform herself into a snow bird, spending winters with me and the rest of the year in a short term furnished rental in NYC. It feels right to her, so that's the plan.

[Tommi]

JustJo,

This is good news. So glad she is doing well enough to be home, and to move on in her own terms. I am so glad she is able to talk about the future with you.

[Novelafemme]

Surgery update!

So my surgery has been moved from next Friday (the 21st) to tomorrow at 3:30. I've been in so much pain and have lost so much weight that my doctor doesn't want to wait any longer.

I'm off to begin the dreaded bowl-prep. Fun-Fun!

[DapperButch]

Originally Posted by Debby

I was told the same. What is the name of the multivitamin you are taking now? I would like to start taking vitamins again.

Hi, Debby. I missed this until the other day and then wanted to contact my dietician before responding.

The multi that I am taking is manufactured by the doc I saw in Chicago. After blood work they determine dosage. I thought it was a "one fits all" multi vitamin (or "one fits all cancer survivors"), but it is not.

I would ask your oncologist if he/she has any thoughts.

Originally Posted by CatalinaRose

Surgery update!

So my surgery has been moved from next Friday (the 21st) to tomorrow at 3:30. I've been in so much pain and have lost so much weight that my doctor doesn't want to wait any longer.

I'm off to begin the dreaded bowl-prep. Fun-Fun!

Ugh, the dreaded bowl prep. Please let us know how it goes.

Jo - thank you for the update. It sounds like several positive things are happening (how mom is feeling, her weight, coming to conclusion about the house). You must be feeling some relief.

[DapperButch]

Originally Posted by Yellow band

I wear these light weight gloves indoors. Too bad what they look like. It's either the gloves, or I am at a high level of irritable from the pain. I bought the gloves at REI. They were only $20.00. I'm typing in them now. (It's still cool and raining, and I have tingling hands and feet)...I went to pain management to learn about this, as it has been 5 years and is part of my life. They key to living with it is to try to not set it off. TRUE!

QUOTE]

I meant to come back to this post. Yellow band, do you happen to remember the name of the REI gloves? I have a hard time typing in gloves and I am not looking forward to struggling to type at work again this winter.

[Dominique]

Originally Posted by DapperButch

I meant to come back to this post. Yellow band, do you happen to remember the name of the REI gloves? I have a hard time typing in gloves and I am not looking forward to struggling to type at work again this winter.

Hi Dapper, It's raining and the stinging hands woke me up. I'm typing in the gloves now. They are made by polartech, the brandname is manzella, comes in male and female and for typing and in the house I wear the warm. It's the lightest weight. They are very sharp and do not look like you are wearing an isotoner. Its available in a warmer and warmest. I also have the warmest. ($70.00) I bought them a size bigger and slip the hand gloved in the warm right inside the warmest. They are not bulky. Buy them now, my experience is they sell out quickly. Popular gloves.

I hope this helps you. This has saved me!

[Novelafemme]

the hospital just called and moved my surgery up again! now it's at 2pm!

i'm sneaking in a smallish cup of coffee and then taking the kiddos to school.

send good vibes and healing energy this way and i'll see you all soon.

[Novelafemme]

Hi Friends!

Got the path report back today and it isn't good. But....I have faith and am gonna take the bull by the horns and tackle this head on. I'm also gonna take a break from the online world for a while, so if you don't hear from me please feel free to reach me via email: landphair@pharmacy.arizona.edu

so long for now and BE WELL, everyone!!!

[DapperButch]

Originally Posted by CatalinaRose

Hi Friends!

Got the path report back today and it isn't good. But....I have faith and am gonna take the bull by the horns and tackle this head on. I'm also gonna take a break from the online world for a while, so if you don't hear from me please feel free to reach me via email: landphair@pharmacy.arizona.edu

so long for now and BE WELL, everyone!!!

Hi, Catalina. I am so sorry. Please know I am thinking about you and believing that you can beat whatever it is you are up against right now.

Thank you for posting your email so that we can contact you.

[DapperButch]

Debby? Catalinarose (I know she may not be here)? JustJo?

Everyone else?

Update for me:

Weather is getting colder, but hands do not seem to be getting worse in direct proportion. I hope this means that the neuropathy is abating. In my feet, no real change, unfortunately.

I continue with the supplements I started taking after the testing I did in Chicago, have done pretty good sticking to a vegan diet, but have done crappy with exercise follow through. I have big sleep problems (falling asleep, even with pills) and find that if I exercise in the morning I drag all day (after 3 weeks in a row of exercise this never did abate..which surprised me), and then after work I am of course wiped out from little sleep ...around 10pm I feel wide awake and can't sleep, and then the process starts all over again. This has been a problem my whole life and I will never have an evening/night job, so....I dunno.

I still have a significant amount of fatigue for being off of chemo for 6 months now, so I don't know what that is about. Granted, I have no information that tells me I shouldn't still be tired, but it doesn't make sense to me that I would still be tired.

I need to call my oncologist's office because I either missed an appointment or didn't call to schedule like I was supposed to, as I know it has been 3 months since I have seen her. Also, I do believe that I am due for a CAT scan.

[Dominique]

Originally Posted by DapperButch

Weather is getting colder, but hands do not seem to be getting worse in direct proportion. I hope this means that the neuropathy is abating. In my feet, no real change, unfortunately.
.

Good morning Dapper...were you able to get those gloves at REI?

I'd love to see you type the neuropathy is gone!

[JustJo]

Hey everyone

Sorry I haven't been in for awhile. Feels like we're in a holding pattern. My mom is home at her own house (now sans car thanks to my sister), which is probably good as she would be driving and shouldn't be at this point.

She has a visiting nurse daily, an aide who comes every other day for a couple hours, and a friend who spends a good chunk of each day with her.

Her weight has dropped a little since leaving the hospital, and she struggles to eat and drink at all. Some days better than others...but too frequently I hear that she managed half a carton of yogurt for the day. She was eating better in the hospital, even though she complained about the quality of the food.

She's on the TPN 24 hours a day...so that's enough food and liquid to sustain her life, but not to thrive. She really does need to eat and drink as well.

The timeframe for the Avastin clearing her system has passed and they are now talking about the plan for seeing what the rest of the mass is. What they find will determine whether she gets on a plane to come here, or has to stay there for another procedure.

She's 2/3 of the way through her chemo...and is now describing it as a race....can she eat and drink enough when she's sick and exhausted and everything tastes like metal to be strong enough to get through it? She has the expectation that, once the chemo is over, she will be able to eat and drink and have no trouble. According to the doctor, that may not be the case...but I'm glad she believes that. It can't hurt.

I know she's happier to be out of the hospital and at her own house, but I'm also worried about the feeling she frequently describes....that she now understands how people long ago just took to their beds, turned their face to the wall, refused to eat or drink, and died. She says she feels like that herself most days.

It's hard to hear.