Cancer Support and Caregivers Who Are Trail Blazers!

[deb_U_taunt]

I didn't have any additional pain or side effects coming off the steroids, but everyone is different, too. I felt better after no more side effects from the steroids, actually.
With the radiation, she will have a hard time tasting food. I recommend plastic utensils, the stainless seems to have a taste. I know it sounds odd, but it did help to use plastic.

Originally Posted by julieisafemme

Hello All! I spent the day with my Mom today. It was the last day of her second round of chemo. She is doing well. Next week she is preparing for radiation. She has a small lesion in the frontal cortex of her brain. It has shrunk from the chemo but they want to try to get rid of it with radiation. She is a little scared about that and so am I.

They will be tapering her off the steroids they have had her on for the brain lesion. She is very worried about this and thinks that it means she will then experience some side effects from the chemo. She has not talked to the doctor about this so she does not have any real facts. Does anyone know about this? I don't know what the results will be of her going off the steroids. The main thing I worry about is the pain coming back.

She has to have 6 rounds of chemo instead of the 3 she initially thought. She is not super happy about that. She will be done in May.

In general she is doing really well and is in good spirits. We just don't know what is coming next and that is anxiety producing!!

I am sending refuah shelimah (complete healing) to you all.

[Heavenleahangel]

Hello, Everyone; I feel so ackward posting on this thread, but I offically "belong" to this community.
My right foot was swollen and tender so I went to my primary care and was told it's nothing to worry about. After 4 months of not being treated and not getting anywhere, I was deperate and went to a podiatrist. He immediately sent me for a xray, then a nuclear bone scan, then a white blood cell skin tag or scan and was told I actually have cancerous bone cells in my foot and I am going to start a biphosponate chemo infusion called Aredia on Monday the 23rd. I have had family members on chemo, but not this type. I have scoured the websites on what to expect and it is scary.
I don't have a lot of family/close friends to help me through this, but I do have my son I adopted and is 4 years old. I have had him since he was a newborn.
I appreciate any encouragement and if anyone has any experiece with Aredia, I would love to hear it-good or bad. Thanks, Heavenleahangel

[clay]

Originally Posted by Heavenleahangel

Hello, Everyone; I feel so ackward posting on this thread, but I offically "belong" to this community.
My right foot was swollen and tender so I went to my primary care and was told it's nothing to worry about. After 4 months of not being treated and not getting anywhere, I was deperate and went to a podiatrist. He immediately sent me for a xray, then a nuclear bone scan, then a white blood cell skin tag or scan and was told I actually have cancerous bone cells in my foot and I am going to start a biphosponate chemo infusion called Aredia on Monday the 23rd. I have had family members on chemo, but not this type. I have scoured the websites on what to expect and it is scary.
I don't have a lot of family/close friends to help me through this, but I do have my son I adopted and is 4 years old. I have had him since he was a newborn.
I appreciate any encouragement and if anyone has any experiece with Aredia, I would love to hear it-good or bad. Thanks, Heavenleahangel

Hi Heaven...YOU have every right to be here...post away. AND the folks here are so incredibly supportive, so compassionate, and will step right in and walk this walk with you. I, for one, am here for you..just give me a holla..I, too, googled it..and it seems to be as safe as anything else out there. If there is anything I can do...from here anyway as I am still healing...please let me know...you know how to reach me...
It is okay to be afraid, be sacred, and uncertain..we have ALL faced it ourselves..firsthand.
IF I could travel, I would be there for you in a heartbeat...I would....but am not able to at this time. I CAN be here supportive and in spirit for you!!!
YOU are a BRAVE WARRIOR...set your mind to you will beat this.,...make cancer your bitch, just as each of us have...we will walk behind you, hold your hand, give you a hug, and write loving words of support and well wishes to you...we leave NO ONE behind here...EVER!
I know nothing I say right now will sink in BUT just know I am with you, my friend..I have your hand in mine..and I won't let go...hugs..YOU can do this..we will march with you....in spirit..in heart..in sisterhood...love to you, sweet lady..Clay xoxo
FIGHT baby, fight!!!!

[Heavenleahangel]

Thanks, Clay; I do plan on fighting this with every ounce of life in me. I have a 4 year old little boy that will be an orphan if I die! Seriously! I have no one who can or will care for him. I have overcome some hellacious situations and came out a winner in true Leo lioness fashion! This too shall pass.....

[Heavenleahangel]

This is what I think of my diagnosis today...

I’ve battled wars not mine to wage
I’ve fought the fight with endless rage.
I’ve been triumphant and stood my ground,
So cancer won’t beat ME this round!
The fighter inside me will stand strong
And battle ‘til this demons gone.
I’ll rally allies to help my plight
And let their love carry on my fight.
If I should falter on this road
I’ll call my family to lighten my load.
For I know I’m loved with faith abound,
So cancer won’t beat me-not this round.
In love’s name I rally all I need
To win this battle, and to succeed.
I’ve fought my battles, won them all
Cancer won’t be my final call!

[clay]

Originally Posted by Heavenleahangel

Thanks, Clay; I do plan on fighting this with every ounce of life in me. I have a 4 year old little boy that will be an orphan if I die! Seriously! I have no one who can or will care for him. I have overcome some hellacious situations and came out a winner in true Leo lioness fashion! This too shall pass.....

YOU will win this battle..and I would take him...in a heartbeat!!! Fight baby!!! Fight!!! I love the poem below....YOU rawwwkkk, Girl!

[clay]

Heavenleahangel..when all the wonderful and BRAVE WARRIORS & supporters read this...they will all be right her, rallying with me, along side you..and they are some awesome people....they all come online at different times...but just wait..you will be surrounded with a solid, close knit group...who WILL see to it that YOU survive and beat this....promise you...each is a solid, compassionate, and supportive being....having faced this same diagnosis many of them OR the caretaker/partners/friends who stood by...THEY are a BRAVE WARRIOR in my book also!!!!
Holding you & J. close to my heart, my friend...Clay

[DapperButch]

Heavenleahangel,

I am very sorry that you have received a diagnosis of cancer. I have not heard of this type of chemotherapy. My knowledge base is pretty limited to colon cancer chemotherapy and I have some knowledge of breast cancer treatment.

I am also sorry that you do not have any close friends or family near by. You may want to look into cancer support groups in your area. Wherever it is you are getting your infusion should have this information.

Also, know that we are here and you are welcome to come and post, daily! Even though we have not all been through the same chemotherapy, we may have tips to deal with the various side effects. At the very least, we are here to listen.

The whole thing can be very scary, but know you will get through it.

Take care of you.

Originally Posted by Heavenleahangel

Hello, Everyone; I feel so ackward posting on this thread, but I offically "belong" to this community.
My right foot was swollen and tender so I went to my primary care and was told it's nothing to worry about. After 4 months of not being treated and not getting anywhere, I was deperate and went to a podiatrist. He immediately sent me for a xray, then a nuclear bone scan, then a white blood cell skin tag or scan and was told I actually have cancerous bone cells in my foot and I am going to start a biphosponate chemo infusion called Aredia on Monday the 23rd. I have had family members on chemo, but not this type. I have scoured the websites on what to expect and it is scary.
I don't have a lot of family/close friends to help me through this, but I do have my son I adopted and is 4 years old. I have had him since he was a newborn.
I appreciate any encouragement and if anyone has any experiece with Aredia, I would love to hear it-good or bad. Thanks, Heavenleahangel

[Novelafemme]

Originally Posted by Heavenleahangel

Hello, Everyone; I feel so ackward posting on this thread, but I offically "belong" to this community.
My right foot was swollen and tender so I went to my primary care and was told it's nothing to worry about. After 4 months of not being treated and not getting anywhere, I was deperate and went to a podiatrist. He immediately sent me for a xray, then a nuclear bone scan, then a white blood cell skin tag or scan and was told I actually have cancerous bone cells in my foot and I am going to start a biphosponate chemo infusion called Aredia on Monday the 23rd. I have had family members on chemo, but not this type. I have scoured the websites on what to expect and it is scary.
I don't have a lot of family/close friends to help me through this, but I do have my son I adopted and is 4 years old. I have had him since he was a newborn.
I appreciate any encouragement and if anyone has any experiece with Aredia, I would love to hear it-good or bad. Thanks, Heavenleahangel

Heavenleahangel,

Welcome to the best support group you could ever not want to be a part of! Like Dapper, I'm not too familiar with bone cancers, but I can sure give you a cyber hug when you need one! My partner and I both went through cancer this year and are both doing GREAT! I'm so sorry you are facing this with a little one to care for on your own.Just know there are a lot of fabulous people here who will help lift you up when you feel too tired to make a go at it on your own.

Much love and light,

Novela

[Tommi]

Originally Posted by Heavenleahangel

Hello, Everyone; I feel so ackward posting on this thread, but I offically "belong" to this community. ......I appreciate any encouragement and if anyone has any experiece with Aredia, I would love to hear it-good or bad. Thanks, Heavenleahangel

Hi there,
Cancer makes you scared, and quiet, and lonely and then, it makes you realize there are things you need to do, and you fel feirce and feisty. We all have a story and a walk along the path, and well, our commonality is knowing we really are goint to be okay.

Besides all the Doctor appointments, tests, medication, chemo, radiation , and on and n, you will need to add fun stuff back into your life.

Sending you bear hugs and chocolate truffles. Tmmi

[mustangjeano]

Dear Heaven, I just saw your post and want to jump in and assure you that you will not fight this battle alone. There are many amazing people on this thread who will support you and keep you in their hearts and prayers. I am not familiar with that particular chemo drug but I have taken the chemo ride.
Please feel free to pm me if you wish and I will also watch for updates from you on here.I love your poem.
Sending healing energy and love to you. Jean

[Countyfem]

Hi Heaven so sorry to hear of your troubles...

Make sure you pay close attention to the side effects of Aredia, I did some research on Web MD not wanting to scare you just want to make sure you are WELL informed.

My prayers and thoughts are with you and your young man and I hope you have a speedy recovery.

[[[[[[[ hugs]]]]]]]]]]

[clay]

(((((((((((((((((((Heavenleahangel)))))))))))))))) )
See how awesome the people in here are!!!!! You will feel love here. This is when people stand together...and hold onto one another, cry with one another, laugh with one another, and support one another...we are HERE....for you..anytime...we are all woven with having faced the same diagnosis as you (in varying forms that is.)
I want to talk with you tomorrow...call me pls? Hugs my sweet friend...Clay
PS This thread is all about people who have suffered the anguishes of that dreaded C word...have lived and nearly died from that and fought to live another day..we have walked on that battlefield of life...and survived..so will YOU. Dig deep...BELIEVE and stay positive...we are all here for you...anyone of us will lend an ear, a shoulder, and anything else you may need....anytime. The Planet is awesome in times of crises...people all pull together....

[SweetJane]

Hang in there Heavenleah. We're all praying for you.

[Heavenleahangel]

Thanks everyone for the love and support. I am home today and am going to scour more websites to gather as much info as I can about Aredia. I almost fell off the couch when I read that side effects can hit you "months" later!! Wow! I know my dr feels the good outweighs the risk, but thats nuts!
Jacob is smart enough to know something is going on. I told him the truth that I need to take some medicine at the hospital and when I feel yucky, I will still be here for him, but other people will be here to help me feel better and make sure he gets to school and everything. I put it in my best 4-year-old-terms I could come up with.
Again, I appreciate your care and support. I will post when I have more info. I go Thursday for my pre-infusion blood work. Wish me luck!!!

[clay]

Originally Posted by Heavenleahangel

Thanks everyone for the love and support. I am home today and am going to scour more websites to gather as much info as I can about Aredia. I almost fell off the couch when I read that side effects can hit you "months" later!! Wow! I know my dr feels the good outweighs the risk, but thats nuts!
Jacob is smart enough to know something is going on. I told him the truth that I need to take some medicine at the hospital and when I feel yucky, I will still be here for him, but other people will be here to help me feel better and make sure he gets to school and everything. I put it in my best 4-year-old-terms I could come up with.
Again, I appreciate your care and support. I will post when I have more info. I go Thursday for my pre-infusion blood work. Wish me luck!!!

morning Heavenleahangel......I know all of this is so overwhelming for you, and for Jacob! He can "sense" your stress and "feel" it also! So yes, he does know something is up. All you can do is to continue with his routines as close to the same as possible. Spend quality time with him, reassure him, and be as positive as possible with all of this...a lot to try to do, yes, BUT it will help allay his fears, too!
The website WebMd has the best and most correct information on this drug! It even has reviews from people who actually took it. It is so easy to want to read all one can and that can get confusing and frightening in itself. Just try to think as positive as possible and keep yourself in a state of calmness..and think in terms of this is going to make me so much better...yes there are "possible" side effects but that doesn't mean they will all mainfest. The most folks get with chemo side effects is flu like symptoms and bone pain. They usually give Zometa to help with that...the main and most important thing to remember is that your immune system will be compromised. YOU need to stay as healthy as possible...people will, SHOULD understand! It is of UTMOST importance that you keep visitors to a bare minimum, keep everyone with any kind of sniffles and cold symptoms away from you! Set up lots of bottles of hand sanitizers all over the space you will be in....you should keep yourself to a confined space as much as possible...durting the treatments...to protect YOU from germs and colds. HANDWASHING is of the single most importance..as well as keeping you hydrated and well stocked in Vitamin D and Calcium!!!Please know I am offering all of this advice having gone thru this with my deceased wife...and as a Nurse!
Positive and upbeat outlook
No visitors during treatment (anyone who has to be around you should have a flu shot as well!!!)
Quality time with Jacob & reassure him...
Vitamin D & Calcium
Hand Sanitizers by the Gallons
Hand soap and LOTS Handwashing!
Smile...deep breathe...we are all here for you, my friend!!!
Read WebMd and reviews...
I am here for you at any given time!!
Big hugs lady..Clay

[DapperButch]

Originally Posted by claybaby

morning Heavenleahangel......I know all of this is so overwhelming for you, and for Jacob! He can "sense" your stress and "feel" it also! So yes, he does know something is up. All you can do is to continue with his routines as close to the same as possible. Spend quality time with him, reassure him, and be as positive as possible with all of this...a lot to try to do, yes, BUT it will help allay his fears, too!
The website WebMd has the best and most correct information on this drug! It even has reviews from people who actually took it. It is so easy to want to read all one can and that can get confusing and frightening in itself. Just try to think as positive as possible and keep yourself in a state of calmness..and think in terms of this is going to make me so much better...yes there are "possible" side effects but that doesn't mean they will all mainfest. The most folks get with chemo side effects is flu like symptoms and bone pain. They usually give Zometa to help with that...the main and most important thing to remember is that your immune system will be compromised. YOU need to stay as healthy as possible...people will, SHOULD understand! It is of UTMOST importance that you keep visitors to a bare minimum, keep everyone with any kind of sniffles and cold symptoms away from you! Set up lots of bottles of hand sanitizers all over the space you will be in....you should keep yourself to a confined space as much as possible...durting the treatments...to protect YOU from germs and colds. HANDWASHING is of the single most importance..as well as keeping you hydrated and well stocked in Vitamin D and Calcium!!!Please know I am offering all of this advice having gone thru this with my deceased wife...and as a Nurse!
Positive and upbeat outlook
No visitors during treatment (anyone who has to be around you should have a flu shot as well!!!)
Quality time with Jacob & reassure him...
Vitamin D & Calcium
Hand Sanitizers by the Gallons
Hand soap and LOTS Handwashing!
Smile...deep breathe...we are all here for you, my friend!!!
Read WebMd and reviews...
I am here for you at any given time!!
Big hugs lady..Clay

Clay,

With all due respect, the above is not true for everyone. Many people have a hell of a lot more than flu like symptoms and many people do not have bone pain. It depends on the chemo drug and it depends on the person.

Additionally, please be careful making suggestions as to which vitamins or supplements a person should take. I went over a list of supplements with my oncologist and she picked and chose which ones were ok to take while I was on chemotherapy. For example, green tea is an excellent antioxidant, and I take it in large doses...NOW. It would have resulted in toxicity if I had taken it while I was doing my chemotherapy. The drugs used in chemotherapy are different depending upon the type of cancer and depending upon the person. Vitamins and supplements are drugs. Just like any other drug, we need to make sure that our drugs work in harmony.

I am not trying to bust your chops here, I just want to point out that we really need to be hesitant giving out medical advice to people, especially when it comes to medications people can get over the counter.

[JustJo]

Originally Posted by DapperButch

Clay,

With all due respect, the above is not true for everyone. Many people have a hell of a lot more than flu like symptoms and many people do not have bone pain. It depends on the chemo drug and it depends on the person.

Additionally, please be careful making suggestions as to which vitamins or supplements a person should take. I went over a list of supplements with my oncologist and she picked and chose which ones were ok to take while I was on chemotherapy. For example, green tea is an excellent antioxidant, and I take it in large doses...NOW. It would have resulted in toxicity if I had taken it while I was doing my chemotherapy. The drugs used in chemotherapy are different depending upon the type of cancer and depending upon the person. Vitamins and supplements are drugs. Just like any other drug, we need to make sure that our drugs work in harmony.

I am not trying to bust your chops here, I just want to point out that we really need to be hesitant giving out medical advice to people, especially when it comes to medications people can get over the counter.

I have to step in and agree with Dapper. I know your advice is coming from good intentions Clay, but many people did that with my mother....and she was spending a fortune on supplements that were actually hurting her.

Yes, we have made changes in her care...but every single step was okayed by her doctor...even something as mild as adding Pedialyte to battle her dehydration.

Drugs, chemo, over the counter medications, supplements, even food....can have negative interactions....and no two people are alike. I'm a huge advocate of researching and learning all you can...online and from people who have/are living it....but ultimately I am a bigger advocate of checking EVERYTHING with your doctor first.

Also, I'm not a huge fan of WebMD and have found some downright incorrect information on that site. Personally, I prefer the American Cancer Society or The Mayo Clinic sites.

[mustangjeano]

Originally Posted by Heavenleahangel

Thanks everyone for the love and support. I am home today and am going to scour more websites to gather as much info as I can about Aredia. I almost fell off the couch when I read that side effects can hit you "months" later!! Wow! I know my dr feels the good outweighs the risk, but thats nuts!
Jacob is smart enough to know something is going on. I told him the truth that I need to take some medicine at the hospital and when I feel yucky, I will still be here for him, but other people will be here to help me feel better and make sure he gets to school and everything. I put it in my best 4-year-old-terms I could come up with.
Again, I appreciate your care and support. I will post when I have more info. I go Thursday for my pre-infusion blood work. Wish me luck!!!

keeping the best thoughts for you and Jacob.

[Novelafemme]

HUGE Sigh of relief!!!!!!

Just got back from the oncologist and my partner's CA125 was THIRTEEN!!! WOHOO!!! He did a pelvic exam and found no swollen or enlarged tissue or nodes. He feels 99.99999% sure she is cancer free!!! WOHOO!! We were all jumping up and down and hugging and crying.

We are so blessed and I am so thankful to have this support group here.

I didn't sleep well last night in anticipation of today so I'm gonna rest my eyes.

Lots of love, Novela