Amanda R :) from California - Dx 2009 - RIP March 2015

[Amanda]

Hello,
Well, it is about the three week mark in my radiation and i am starting to get very sleepy! Today they took blood and are looking I would guess at my red blood count *sigh* I am still trying to be strong and positive but at times like this it is just so hard to do.
I know now why you said for me to possibly not do this Olga I should have just listened to you! I am half way thru now with 23 more to go they say.
I have realy no skin reaction as of yet and i am using Biafine cream X 3 a day on my right calf. The inside of my right calf though is starting to hurt also from the treatments. They are only hitting a small part of my bone and i am greatful of that!

Does anyone have any tips to not feel so sleepy? I could realy use the advice right now it is hard as heck taking care of Aidan and being a mom thru this.

*Healing hopes and hugs*

Amanda R

[Beth]

Hi Amanda -- my son is sleepy all the time too -- he drinks lots of iced tea with lemon (home-made, not too sweet) -- tea is good for you, and he says the energy drinks are great -- he drinks the kind called fuel -- they have B-vitamins in them ... good luck!

Beth

[Amanda]

Hello Beth,
Thank you for replying
I will start drinking green tea again. I cant wait to get radiaton over and done with.
I hope that your son feels better soon

Amanda R

[Beth]

Amanda,

thanks! one thing -- my son doesn't like green tea -- just plain black lipton tea with a little sugar and lots of lemon

Beth

[Bonni Hess]

Dear Amanda and Beth,
Just a quick note for now and I will write more later, but I wanted to add to your discussion that green tea is one of the things that Brittany is not allowed to drink while on the Cediranib because it can apparently possibly interfere with the effectiveness of the medication. Have your doctors discussed this with your son Beth, as well as the other dietary restrictions which include grapefruit, watermelon, red wine, kumquats, and star fruit? My special thoughts and healing wishes continue to be with you Amanda and with your son Beth. Please take care.
Reaching out to share hugs, special caring, and continued Hope,
Bonni

[Amanda]

Dear Bonni,
Thank you mt friend for taking the time to post back to us while you are away from home.
I will tell him i am drinking the tea tomorrow and i bet you are right and I will be pulled from it, lol It is waking me up a lil and right now i am starting to get realy pooped from the radiation or stress i cant figure out witch one it is. I hope to hear soon how Brittney is and every night she is in are prayers in hopes that the new drug will either kill of slowly or stop the tumors! Tell her she is amasing and her streangth and smiles are a role model for every paitent with cancer not just ASPS.

With love, healing hope and prayers to you all!

Amanda R

Dear Amanda and Beth,
Just a quick note for now and I will write more later, but I wanted to add to your discussion that green tea is one of the things that Brittany is not allowed to drink while on the Cediranib because it can apparently possibly interfere with the effectiveness of the medication. Have your doctors discussed this with your son Beth, as well as the other dietary restrictions which include grapefruit, watermelon, red wine, kumquats, and star fruit? My special thoughts and healing wishes continue to be with you Amanda and with your son Beth. Please take care.
Reaching out to share hugs, special caring, and continued Hope,
Bonni

[Bonni Hess]

Dear Amanda,
Thank you for your very kind and caring words and for your special prayers and healing wishes for Brittany. I didn't mean to imply in my previous entry that you shouldn't drink green tea, but only that it is one of the food restrictions for the Cediranib Clinical Trial which Brittany is participating in because it may cause more side effects from the Cediranib or make the Cediranib less effective. In addtion to the other food items and juices which I listed in my previous entry, while taking the Cediranib Brittany is also not supposed to eat/drink blood oranges, sour or bitter orange, pomegranate, camomile tea, black mulberry juice, Guggal Resin (which is a natural product of India), pummelo, shaddock, and, pamlemousse. Hopefully the green tea is not something which will interfere with the effectiveness of your radiation treatment, but it is always good to discuss the effect of nutritional supplements on your specific treatment with your doctor. I am so sorry that you are experiencing increased fatigue from the radiation, but Hopefully it will resolve quickly once your radiation treatment is completed. In the meantime, try to listen to what your body is telling you and give yourself permission to rest as often as necessary and as you are able. I know that you are a busy single mother, but Hopefully you will be able to get some help with shopping, cleaning, cooking, and in taking care of your little boy from family and friends until your radiation treatment is finished and you have been able to regain your energy. Take care dear Amanda, stay strong, and hold tight to Hope.
With more hugs, special caring thoughts, healing wishes, and continued Hope,
Bonni

[Amanda]

Hello ASPS friends
Well, I just got a call and my rib is ASPS He said that it looked like I have had it there for a long time and that it was completely localized and that was a good thing! He wants action now from the other Dr's in reference to surgery of removal of the rib or my Onc starting chemo.. My Chemo Onc said there are a few new drugs that look very prommising and he wants me on then and then they will remove the rib if needed. They are the Anti Antigen *spelling* I will post what the drugs are after I see him and the low does amounts he is talking about. He is very good and I have a lot of trust in him. He is still saying that for now he doesn't think that the things in my lungs are ASPS.. But, we will see with my CT scans that I am doing this next week. I am so scarred to even get it done
I know I need to know and I know it can make a huge difference in my life so I am doing it .. yet dreading the results.

I feel so great physically right now :/ Shouldn't I be feeling bad?
I hate cancer so much!

Amanda R

[Amanda]

Hello,
I went to my Onc today and gave him the disks. One from three and a half months ago of chest and lungs and also the one i did three days ago of pelvic, abdoman and lungs... I was so darn scarred! He took the CD's to his radiologyst and came back after they had both reviewed them and said that there was noting seen in the pelvic and Abdoman area and that i now from what the radiologyst is seeing only four lil things in my lungs!
Olga you are amasing you were right some just go away <3
They want me to do the last two weeks of my radiation to my leg and i told my Onc that i would rather stop the radiation to the leg and revove the darn rib. This from also remembering what Olga said about the chances of this even returning in the area :/ He said he would talk to the others and get back to me. The surgen said that he would be removing the part of the 8th rib that has the ASPS and that then they would do radiation :/ But, It will also hit my lung a lil bit and i do not know how i feel about that. Has anyone else been thru this and did it hurt the lung?

I just want to again thank every person that has ever posted to me! Even information like the tea helps is a huge difference to me and also makes me feel as if i am not alone! Also, every post that is made about a person that is still doing well brings lights of hope to myself and i am sure others. I read the postings here a lot about drugs and trials and though i get very confused i stil get a feeling that there is hope for all of us and maybe soon we will be closer to a cure.

With hopes that we soon have a cure for every person that is effected by ASPS!

Amanda R

[Olga]

Tell to your oncologist that in our community we had an experience of treating of the bone metastasis (Brittany Hess, in the leg bone) by the RFA with the success so they might want to try it as well on your rib if the size is OK and the location allows - I have no idea if in can be done in the rib with the intercoastal nerve close by. I am not sure that I would be comfortable with the radiation catching some lung tissue in its field as most of the ASPS patients have their lung surgeries at some point and we want to keep the lungs as healthy as possible. What about these 4 nodules in the lungs - did they change in size or not?

[Amanda]

Hello Olga,
I am concerned also about the radiation after the surgery also and will again tell them that. I will also bring up the lung issues and that if and when i do have to have lung surgery how it could cause problems in the future. When i asked the radiation Onc he said he would do what he could to miss my lunga yet that a small amount of my lungs would still be hit by the radiation. This not only causes me to be concerned in reference to the damage to my lungs but a secondary sarcoma/cancer...

He said that the rest of the noduals in my lungs had not changed in size from what he could see. I am praying that they all go away! Yet, i am also not holding my breath on it!

I am presonaly finding it odd that it went to my rib before *from what it seems* to other areas :/ Has this ever happened before in anyone you know :/ One of my doctors said that it seemed that it had been in the rib a long time...

This desease is so confusing to me

Amanda R

[Amanda]

Hello,
I was wondering if the rib or the leason on the rib should be sent to Dr Vistica? Is this some thing he would want..
Please, post back and let me know the surgery should be within three weeks.

Amanda R

[Olga]

Dear Amanda, thank you for being active in trying to donate your tumour. There is a link to the relevant information on the front page of our web-site
http://www.cureasps.org/?page_id=22
I hope that you will find the answers there and sure, David Vistica will be very glad to have a sample from a metastasis located in a bone, it is very rare that he get a chance to have it for a study.

[Amanda]

Hello Olga,
Well, when ever they take some thing from me i will send it to him. I will look tomorrow contact my Onc about them getting every thing they pull out of me from now on. I am very upset that i didnt have my head together enough when my primary was taken out i would have loved to have sent it to him also... I wonder if they have it still and if so i will have that sent also...
Thank you for letting me know. Some thing positive needs to come out of these surgerys and maybe this will help him find a cure for us

Amanda R

Dear Amanda, thank you for being active in trying to donate your tumour. There is a link to the relevant information on the front page of our web-site
http://www.cureasps.org/?page_id=22
I hope that you will find the answers there and sure, David Vistica will be very glad to have a sample from a metastasis located in a bone, it is very rare that he get a chance to have it for a study.

[Amanda]

Hello
I wanted to update everyone on what just happened. I am now off radiation *yay* I have been going now for almost seven Weeks and I now have two small blisters on my right calf and the onc surgeon that removed my primary said stop now! I know it is a small thing to many. But to me it is huge! I feel that I am free for a few weeks till my rib surgery to heal and get healthy and I am so happy!

I do not know if I updated so I will again. My rib lesion is in the 8th rib 2.5 cm and they are saying it has been there for years it actually made a hole in my rib and the onc surgeon said that what ever I am doing keep it up because it has not allowed it to spread from the rib area as far as they can see right now. My abdomen and pelvic CT also came back clean and I was so worried about that! I had to drink stuff that was disgusting and I feel for anyone else that has to drink it. They even give you a straw.. Like i wanted to sip the stuff *Yuck*

My rib is being sent to Dr Vistica and I am very thankful that we have about four weeks because it takes that long to set every thing up to have it sent to him. He is awsome!

Fernett, Olga, Bonnie and everyone I thank you very much because of your postings I will be having Kinase typing and immunohistochemistry .. also, molecular profiling with a special fixative (Phosphoguard) that is supposed to preserve phosphorylated receptors (so identifies activated receptors, not just the presence of receptors).
These came straight from your posts, lol I do not know enough about this disease to even word this right so I copied it from your posts. Also from everyone I have seen what just going on a chemotherapy can do with resistance's and spread and I talked to them and they agreed that right now may not be the time to start it because it is stalled so far as they can see right now. They though want me to get on the trail for Cediranib and they will be looking into it for me when it comes to California.

I know this is still in me but I am so happy right now that it is stalled for now and that I am off the radiation and can heal and then have the surgery! An be me for a while

In loving hopes for a cure for this disease for all!
Amanda R