Cancer Support and Caregivers Who Are Trail Blazers!

[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

[clay]

Originally Posted by 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

WhoooHooo, Novela!! THAT is awesome!!!! She made cancer her bitch, also..that is what debby & I say. My oncologist LOVED it and wants it on a shirt for her to wear!!!
Congrats.....I am so thrilled to hear this...we are ALL BRAVE WARRIORS!! Rock it, GF!!...much love and blessings...Clay

[DapperButch]

Originally Posted by 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

Wonderful! <High fives all around>

[JustJo]

Well....we are up and down over here.

Mom has started chemo again...the "modified" chemo she had high hopes for. Turns out it makes her just as sick...and she will still have to have it every 2 weeks....basically for as long as she can stand it.

Right now she is in the first couple days after the treatment....which means lots of sleeping, lots of depression, lots of anger and tears, lots of throwing up, and lots of conversations that are pretty rough on both of us about is it better to live a long time miserably or a short time feeling relatively normal?

Given the level of abdominal pain she has I think the "relatively normal" part is a moot point.

She has not gone back onto the morphine, but has had to up the number of Lortab she takes each day....and is still using the Fentanol (sp?) patches as well.

We have fixed the dehydration problem, which helps...and she is still eating better and managing to keep the weight up (after a brief issue when she got overly cocky and ate salad and pizza in the same day). Her goal is to hit 130 lbs so she can go off the TPN and get the Pict line out.

Evidently the issue, for her, is that she is literally freckled inside with punctate lesions all over the external tissue of the small intestine, liver and kidneys. These are cancer, but can stay "dormant" (for lack of a better term) indefinitely...perhaps longer with chemo although they can't tell us that for sure....or can become active and develop into tumors at any point.

The only procedure that is possible is called a "belly bath" or "belly wash"....and she is in no way strong enough to survive it. Even with the procedure....chances are it won't eliminate the problem. Her doctors don't recommend that she have it, at this point anyway, because she is more likely to die on the table than have it help her.

Right now....it's one day at a time....a little better now that she can eat and drink....but still very, very rough.

[clay]

hugs to Jo & mom...keeping you both in thoughts and prayers!
HEAVENLEAH: I am walking with you, my dear sweet friend!!! Much love & prayers...with you & with Jacob! Keep in touch with me....sending you healing energies and white light of peace....my friend! love you & Jacob!!!
To everyone...big hugs...and hoping everyone has an awesome week!! I heart you all! Clay

[Heavenleahangel]

It's a little over 12 hours and I go to the treamtent center for my first round. I have talked myself out of taking the cbemo atleast 4-5 times. I think I can get past the bone issues without it. As I was cooking for my Dad's bday dinner today, I accidently put my weight on my right foot and I heard a "pop" really loud and a burst of pain that lit me up like I was on fire! My ankle popped and I am pretty sure I broke the ankle. I will keep everyone posted on my progress tomorrow. Please keep the prayers coming...my faith is a little low right now....

[mustangjeano]

Originally Posted by JustJo

Well....we are up and down over here.

Mom has started chemo again...the "modified" chemo she had high hopes for. Turns out it makes her just as sick...and she will still have to have it every 2 weeks....basically for as long as she can stand it.

Right now she is in the first couple days after the treatment....which means lots of sleeping, lots of depression, lots of anger and tears, lots of throwing up, and lots of conversations that are pretty rough on both of us about is it better to live a long time miserably or a short time feeling relatively normal?

Given the level of abdominal pain she has I think the "relatively normal" part is a moot point.

She has not gone back onto the morphine, but has had to up the number of Lortab she takes each day....and is still using the Fentanol (sp?) patches as well.

We have fixed the dehydration problem, which helps...and she is still eating better and managing to keep the weight up (after a brief issue when she got overly cocky and ate salad and pizza in the same day). Her goal is to hit 130 lbs so she can go off the TPN and get the Pict line out.

Evidently the issue, for her, is that she is literally freckled inside with punctate lesions all over the external tissue of the small intestine, liver and kidneys. These are cancer, but can stay "dormant" (for lack of a better term) indefinitely...perhaps longer with chemo although they can't tell us that for sure....or can become active and develop into tumors at any point.

The only procedure that is possible is called a "belly bath" or "belly wash"....and she is in no way strong enough to survive it. Even with the procedure....chances are it won't eliminate the problem. Her doctors don't recommend that she have it, at this point anyway, because she is more likely to die on the table than have it help her.

Right now....it's one day at a time....a little better now that she can eat and drink....but still very, very rough.

Jo, I can only imagine how terribly hard this time is for your Mom and you. Keeping you in my thoughts and prayers.

[SweetJane]

JustJo,

I'm keeping you in prayer, too.

[mustangjeano]

Originally Posted by 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

EXCELLENT NEWS. Thank you for sharing it with us.

[JustBeingMe]

My uncle's Neuroblastoma brain cancer came back again. He was cancer free for 6 yrs until this last 6 month check up. He had surgery a few days ago, just got home from the hospital Tues. He's eating well, and walking around but his gait is not stable nor is the usage of his left hand and arm. His neurosurgeon was able to save his eyesight, otherwise he would have gone blind and would have NOT done the surgery. He is a very strong man and I love him with all my heart, but he is retired now because of this, otherwise he would still be working as a master carpenter. He's 70 now, and feels like he is worthless and I just try to remind him how much we all love him and that he has a 3 yr old great grand daughter that loves him soo much and that just being around to watch her blossom and grow is a blessing. I don't know what else to say to him. I feel lost when he says to me he feels useless and worthless and says he shouldn't have done the surgery that they should have just put him in the ground already. Breaks my heart to hear him speak like this. Anyone have any suggestions to help me when he is like this? I keep reminding him also that he is the only remaining cancer survivor his doctor has now for the past 6 yrs and how proud of him his doctors are of him. He does everything they tell him to do so he can get well and remain healthy. Thanks for listening to me babble on and on.

[Heavenleahangel]

It's Friday evening and sowly, but surely, the fear and uncertainty of my starting chemo Monday morning is setting in. I have always fought for everything and anything in my life. Whether I fought *for* it or *against* it. Either way, whichever side I was on, I have been a warrior. Now, I am not sure whether I am fighting for it or against it.
The pain in my foot and ankle where the bones are affected is horrendous and there hasn't been anything that has totally eased the pain.
The lioness in me is rallying once more for the fight and will demonstrate my roar Monday morning when I show up at the cancer treatment center of Samaritan Hospital in Troy, NY. Thank you all for the prayers and support everyone has shown so far. I will keep you posted....

[clay]

Originally Posted by Heavenleahangel

It's Friday evening and sowly, but surely, the fear and uncertainty of my starting chemo Monday morning is setting in. I have always fought for everything and anything in my life. Whether I fought *for* it or *against* it. Either way, whichever side I was on, I have been a warrior. Now, I am not sure whether I am fighting for it or against it.
The pain in my foot and ankle where the bones are affected is horrendous and there hasn't been anything that has totally eased the pain.
The lioness in me is rallying once more for the fight and will demonstrate my roar Monday morning when I show up at the cancer treatment center of Samaritan Hospital in Troy, NY. Thank you all for the prayers and support everyone has shown so far. I will keep you posted....

Good luck, Heavenleahangel! Still in your corner...YOU can do it....do it for Jacob..do it for YOU! Let the lioness courage and strength raaawwwrrrrrrr...hugs my friend....Clay
Prayers and healing energy coming at you...mega loads!

[Midnight]

Originally Posted by Heavenleahangel

It's Friday evening and sowly, but surely, the fear and uncertainty of my starting chemo Monday morning is setting in. I have always fought for everything and anything in my life. Whether I fought *for* it or *against* it. Either way, whichever side I was on, I have been a warrior. Now, I am not sure whether I am fighting for it or against it.
The pain in my foot and ankle where the bones are affected is horrendous and there hasn't been anything that has totally eased the pain.
The lioness in me is rallying once more for the fight and will demonstrate my roar Monday morning when I show up at the cancer treatment center of Samaritan Hospital in Troy, NY. Thank you all for the prayers and support everyone has shown so far. I will keep you posted....

Sending positivity and energy your way