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

[Bonni Hess]

Dear Amanda,
I am so sorry that you are not feeling good and that you are struggling with so much worry, anguish, and fear. I am grateful that you shared your feelings and reached out to everyone for strengthening support and encouragement which is so very important in this difficult battle . We all know and understand far too well what you are going through and how you are feeling. It is very difficult to try to be upbeat all the time, and you certainly don't need to apologize for not feeling "peppy and positive". I agree with Olga regarding her advice to go forward with the surgery to remove your rib met as soon as possible. If you don't have it removed and it grows, it could require a much more difficult surgery with more bone and tissue loss, or possibly even become unresectable. In our eight years of ASPS experience, we have found that it is always best to remove/treat the tumor at the smallest possible size to try to have the best chance of a successful outcome. This is why we recently had Brittany's small abdominal wall tumor resected even though it was small and unsymptomatic, and she has other unresectable tumors in her body. Also, we think that it is very important to try to reduce the body's tumor burden as much as possible to help strengthen the immune system so that it can better fight the disease, and also to try to prevent the tumor from causing further metastasis like we think that Brittany's large undiagnosed spinal tumor heartbreakingly did last year. My special thoughts and healing wishes are with you for a quick and speedy recovery from your flu, and my special prayers and greatest Hope will be with you for good news results from your upcoming scans. In the meantime, please take care dear Amanda, get well and feel much better real soon, and feel embraced by gentle hugs and special caring.
Heart to heart with special caring thoughts and continued Hope,
Bonni

[skyflower]

hi amanda, i have been silently following your story for a while... until now at least! lucio (my husband)'s nutritionist would be so proud of you! it sounds like you are consciously trying to positively impact your immune system even with all the craziness going on.
lucio had a thoracotomy last year over the holidays. he was home for the holidays, but he was recovering. it wasn't ideal, but there really is no ideal timing for surgery huh? and the alternative was trying to get penciled in sometime way after. as long as you are comfortable with the surgeon (and their levels of experience) it might be good to get it done and out of the way. that way you have a chance to recover for a few weeks and then enjoy the holidays? for us, there was a lot of worry and stress leading up to it, and then after was recovery and... less worry and stress?
i hope you feel well soon! and that you find comfort in whatever treatment paths you choose.
take care!
-lokelani-

[Amanda]

Hello Bonnie
*hug*
Thank you, and I agree with what Olga said also I am getting this done in November as soon as i have made enough money to be able to make a ok amount og money on my private disability i have been payng into for years. I will start a new show and this will be on mondaya nd it should carry me thru till the end of October when will be taken off work and get scans and start phiscal thearipy for my leg that doesnt bend right and then prep for this surgery. In an odd way i am kinda looking forward to getting this done because we still have no clue if what is in my lungs is ASPS or my smoking or when i was lil and had phnumonia. I pray that it is not then i would be NEG for a time till this showes up again if it does :/ Maybe i am a fool in thinking that this would be the end of it for now *sigh* has it ever been like this with someone? It has had a very long time in my bosy i think over ten years now. Damit i hate ASPS! What it has done to my life and the lived of others and the children! The light i see in this now is the drug that Brittany is on and as i have said i think this will be amasing for us all.
As for the flue i wish this apon no one! It s very bad and I have never felt like this before. I think we need to start a thread about this and tips and things that we are all going to do to protect are ASPS paitents especialy the ones on chemo from this flue.

In healng hopes..

Amanda

[Amanda]

Hi Skyflower
I love that name btw
Hoe is he doing now?
Yes, i want to do this durring the holidays also and though it will be a drag It will be winter *As winter as it gets in California* lol It will make it easier to be in bed and rest. I am very glad you are posting and thank you for your suport and kind words it does help a lot. I wish with all my heart that all the others andt i know are lurking on this forums even the if they are NED would post. To myself and so many others it means so much!
Yes, i am not stressed but also in an odd way as i said to Bonnie looking forward to getting this over with and trying to regain my life till or if this comes back to haunt me again. I try ot be very possitive and it is NOT easy.
I need a good nutritionist yet I cant seem to find one. Anyhow, again thank you and i am so glad you are here with us now

In healing hopes for all!

Amanda

[MANIA]

Amanda,
I admire Your optimism,and I'm very sory for the bad flu you got. As others suggested I also think getting primary out is an important step in treating ASPS.
As for nutritionist I thought that I ask if You knew about http://crazysexylife.com/about/ and Kris Carr who is living with cancer. On the link I gave You there are directories maybe through it You would be able to find someone whou You are looking for.
I hope You get well soon,have nice work on Your show (I'm in shooting business too:)) and your leg gets better as well!
Take good care

[Amanda]

Hello Mania
Thank you for posting to me and i will be looking at this link <3
What do you do in film? I work on set as a medic. Its been slow in California latley after the two strikes.. Yes, i feel that even un signed SAG was in strike mode, lol I think it will take till after christmas to get the work moving again here. An yay by then i will be healed and ready to go

In healing hopes for all!

Amanda

[Amanda]

Hello,
Though i am still in denial that what is in my lungs is ASPS here goes and the "Impression" that they have is this.....

The ASPS in my 8th rib they say "Does apear to be slightly larger" it is now 4.0 cm and is 1.3 cm thickness...
They did not say by how much :/ I am getting it removed within this next month so i am not freaking out

The lungs they say are still only five things and i am thankfull to god for that!!! the "Impression"
"small bilateral pulmonary nodules are re identifies whith i suspect are slightly larger when compared to the older CT chest of 5/15/09 exam. again, these nodules also would be nonspecific but again would be concerning for metastaic disease and further correlation is recommended."
The sizes are in cm's yet after learning a lil about cm and mm it seems that all 0. cm's are the same as mm so here goes and i was wrong there was six this whole time *sigh* sizes are all in mm 5, 3, 3, 4, 2, 4...
I also looked at the scans done in Feb 09 and saw that all of the sizes are the same and that only two were maybe 1mm bigger :/
If there is even a slight groth should i get in the new drug Ced? Or as i am being told to wait and see if there is realy a change? also after looking the CT was sequential 2.5 mm axial reconstructions and as far as what i have read here it would be in 1.0 mm :/

Let me know what you all think on this i am confused and would realy like to NOT get on a drug unless it is realy needed

MRI of my right calf, knee and thigh are all clear of any cancers now and the radiation does not seem to have caused so far scar tissue that will become a problem and the swelling i have will go down as time goes on and the PT i just started will also help a lot with the recovery...

So all in all it seems OK :/ I know the rib is ASPS and I pray to god that what is in my lungs is not ASPS though i as i have said before will still not hold
my breath. I just do not understand why it is that they are so veige on the growth in the lungs :/ I am waiting now for a call from my chest Dr Foshag and Onc Dr Forscher...

BTW i love my doctors and trust them very much. It took a lil time for me to get to that place with trust but i am now there finaly

In healing hopes for all and hugs!

Amanda

[Fictional]

Hi Amanda,

Just from experience of others in this forum, the presence of a 4 cm metastasis and other sites suggests dissemination. It is best to begin a medication. If cediranib is not possible, then Sutent or possibly Pazopanib. Medication may prevent new metastases too. The presence of a bone metastasis is usually of sufficient concern that it might worsen your condition to delay medical treatment.

You will not be able to enter a clinical trial before or usually 3-4 weeks after surgery. But you could have Sutent or possibly Pazopanib prescribed as soon as 3 weeks or so after surgery, whatever your surgeon decides.

Most surgeons will only consider lung surgery if there is no other site but the lungs.

I don't want to concern you Amanda, but also want to share information in the event it may be helpful to you. Sometimes when a large tumor is removed, there can be rebound growth in the other sites. It is usually good after surgery for removal of a large ASPS tumor to get on something.

With blessings, 'F'

[Bonni Hess]

Dear Amanda,
Thank you for your detailed update. I am so very sorry for the additional concern and confusion which your new scans have caused for you, and I Hope that you will be able to get some clarification and better understanding about the results and some treatment recommendations and advice when you talk with Dr. Foshag and Dr. Forscher. Like 'F', I don't want to cause you additional concern, but I think that it is very important that you address the possibility that the pulmonary nodules are ASPS mets based on the radiologist's notation regarding his/her observation that the the nodules are "concerning for metastatic disease", and also the heartbreaking nature of this disease to almost always metastasize to the lungs. I am grateful that there are no additional lung nodules and that the amount of increased growth, if any, is very small. I am grateful too that you are scheduled to have the rib met resected in November since it does appear to be growing and it is important to have it removed before it gets any larger and possibly grows into surrounding tissues or organs. Until recently, resection, ablation, or radiosurgery of ASPS tumors has been the most effective way of controlling this disease since there were no effective systemic treatments available, but the problem is that not all ASPS tumors are candidates for resection, ablation, or radiosurgery due to size and/or location of the tumor. This is the heartbreaking situation which we encountered when Brittany developed an unresectable/unablatable met in the head of her pancreas, and after almost eight years of trying to control the disease with over twenty resections, ablations, and radiosurgeries in the absence of any effective systemic treatment, we had to pursue a systemic treatment to try to shrink/destroy the pancreatic met and the multiple lung mets and to try to stop the very aggressive progression of the disease. Since there are now thankfully several promising new systemic treatments available, including Cediranib, I personally think that it would be advisable for you to at least consider a systemic treatment to try to prevent further metastasis of your disease to an area which might not be resectable/ablatable. I know that this is a difficult decision to make, and certainly your doctors and/or other people might suggest that you just continue to monitor the growth of your lung nodules, but the harsh reality is that this is a metastatic disease. It is also typically an indolent disease with slow growing tumors, but ASPS tumors in some parts of the body, such as the brain, can grow very rapidly. However, I have known a couple of patients who have been able to control the progression of their disease thus far through only resection of their primary tumor and then continued resection of their lung mets with no systemic treatment, but the majority of the patients who I have followed have not been so fortunate. One of our huge concerns with the traditional harsh chemos like adriamyacin and ifosfomide was that they are so toxic that they weaken the patient's immune system which makes it more difficult for the body to fight the disease, but Brittany has thankfully not experienced any immunosuppression thus far with Cediranib which is an anti-angiogenic medication that cuts off the blood supply to the tumor cells as opposed to a toxic chemo that kills both the cancer cells and the healthy cells weakening the immune system. I wish that I could tell you what the right decision is dear Amanda, but I can only encourage you to research as much documented and anecdotal information as possible and explore and discuss all options with your doctors before making your decision. Please take care dear friend, and keep us updated on your doctors' recommendations and your decision.
Reaching out to share special hugs, caring thoughts and continued Hope,
Bonni

[Amanda]

Thank you both for your caring advice :*)

In tears this morning after reading what you both said i called the Ced trial and spoke with the nurse who i love and she said that i needed to talk to a new nurse but spent a lot of time on the phone with me. I love this lady she spent a lot of time on the phone telling me that the mm change in two of the lung things they found could be due to film in the CT. I also spoke to Dr Forschers RN susan who i also love and she said that he may not want to do a a thing yet and watch. I will be seeing both of the doctors next week and then the decisions will be made. But, on monday i will be calling the Ced trial and starting to send my info to them so i will be ready to go. I realy feel that this trial maybe the cure for this evil dam desease i am not one to hate but i really hate ASPS and i want it dead in all of are bodies!!!! If Dr Forscher says we will wait three months till the rib is out and watch to see if there realy was a change in the lungs i will do that but i will be honest i dont know how much longer then that i will wait.

I want this tumor out of my rib next week and i am going to push very hard to make it happen!!!

I cant be in denial i have a child that needs me and i am not going to whimp around and wait.
I have no idea how i can pay to fly to the trial or stay in a bed and breakfast but i will some how.

I will go to Ced trial first and not subject my body to drugs that will injure my immune system. Does anyone know if Ced attacks the cancer sells in the blood stream that have not formed tumors yet?

I am scarred and crying and do take deeply into account what the posters say here. I am so thankfull I have you all and wish i could return to you all the caring and advice that you have given to me and others. You are all truly special and loving friends and thank you with all my heart!
I hope that one day we can all meet and it will be in celibration of a cure for ASPS.

In healing hopes for all and hugs!

Amanda

[Bonni Hess]

Dear Amanda,
I am so deeply sorry and saddened that my and 'F''s postings caused you tears and fear, as that certainly was not the intent. It IS important to be realistic, but equally important to remain positive. With this disease knowledge is power, and I just wanted to empower you with the knowledge which I have gained and the observations that I have made during Brittany's eight+ year ASPS battle, so that you have as much information and as many viewpoints as possible on which to base your future treatment decisions. Although I am not a doctor, based on our now countless scan experiences, I agree with the NCI Cediranib Trial nurse that the very minimal growth in two of the lung mets could certainly be due to the way that slices were done on the CT scan. Two mm. is very small, and there can very often be that much variability from scan to scan. As you may have noted from Elaine Anderson's wonderful news update on Sean regarding his apparent continued incredible remission, there are situations (although heartbreakingly very few) in which ASPS patients have achieved disease stabilization or remission without systemic treatment. This disease is so unpredictable that it is very difficult to know whether to just monitor tumor growth with regular scans, or to aggressively proceed with a systemic treatment. Two years into Brittany's disease she experienced a spontaneous remission of all but five of her more than fifty lung mets, without having undergone any treatment except the resection and post surgery radiation of her primary tumor. Based on that miraculous occurrence, we proceeded with just monitoring her lung mets with initially chest CT scans every three months, and then moved to her having chest CT's every six months when she seemed to be having no new lung mets and only none to minimal lung met growth. However, despite the fact that her lung mets were mostly stable for about two more years, one of her six month chest CT scans extended low enough to show the top of her liver where shockingly a small liver met was seen. Because of this new met, we then had complete body scans done, and two brain mets were also devastatingly diagnosed. Some doctors seem to feel that monitoring lung mets with routine scans is adequate to determine disease progression, but tragically we found out that this is not always an accurate indicator. I think that it will be very important for you to give your body time to heal following your next week's rib surgery and for your immune system to fully recover before you proceed with any other treatment. Hopefully by that time, you may have more information on which to better base your decision. In the meantime, please take care dear Amanda, stay strong and keep your postive attitude as that is so important in fighting this disease (I would like to recommend Dr. Bernie Siegel's excellent book titled
"Love, Medicine, & Miracles" if you haven't already read it, and if you have time to read it in your very busy Life), and know that you have the continued special caring, friendship, and support of those of us on this Forum who truly know and understand what you are going through.
Reaching out to embrace you with special hugs, caring thoughts, and continued Hope,
Bonni

[Amanda]

Hello everyone,
I just got home after seeing Dr Forscher and he said that after he looked at the CT of chest he said he didnt see a change. But, to make sure his people will be looking at this today and they have a way to i think slide them all together and see for 100% sure. I finaly said for the first time to anyone that i believe that even if my lungs are stable that it would be a fools wish and hope that would make myself believe 100% that what is in my lungs is not ASPS. I am about 90% sure it is now and though i am shocked that i do not have 100's of them after we think i have had this for about ten years it is what it is. I will be by the end of Nov getting the evil thing out of my rib and i may do this at the end of Nov because i want to be mom durring the holiday. I am aware that this may change when i again hear from Dr Forscher i will stay on the last week of Nov for this surgery then i will be in hopes that i can sit and watch my lil one open his presents on Dec 25th and not be in pain. I just want to be mommy on the 25th and i am sure that all of the parents here understand that.
It would seem that for some reason the ASPS that i have is growing oddly very slow and after reading so much in here i am perplexed :/ Why is my ASPS not acting like others? Anyone have any ideas? Hormones? Will it be going postal soon? Is anyone elses slow or is it allways this slow?
Dr Forscher said that after surgery we will talk about if he feels i need to start a chemo.
I was sitting in the office and as Dr Forscher walked in the room with me new RN from the Ced trial called me. I wanted everyone to know that she is a love just like mary ann is and we are so lucky to have these loving ladies on this trial. I need to actually call her back right now and tell her that Dr Forscer now has her phone number. If you are thinking about getting on this trial get on it now. They are getting more ASPS paitents and it makes me wonder how many are lurking here and not posting. If anyone reads this and is lurking and trying to get on this trial please post so we can not only meet you but to get a clear idea how many are on this trial and to also get an idea of how many have this.
Its odd if my lungs are stable then i cant get in the trial. I dont know if i want to be stable I realy feel that this will help and i want the things in my lungs to just go away I pray that everyone that is not stable will get on this drug asap! I dont know how many they are going to take so please dont wait Who knows what the FDA will do and if they will even let this drug out to the public

In love to all and healing hopes for everyone including myself!
Amanda

[Amanda]

Hello Bonnie
I need the advice that you both posted and cancer hurts a lot and tears are usual at time of scans. Honesty and care is what i receved from you both and i cheerish all posts given even if at times i will cry it is ok <3 The truth hurts but cancer kills and i would rather have the truth and act on it before it getts worse rather then sit and then and i am not here for my son and myself and life.
Its funny as i was postiong you posed to me, lol A few hours of freaking out and tears were all i needed and then as usual i got back on my war pony and went after getting things started in any direction needed to keep me healthy. I even took a list of qiestion to Dr Forscher *poor guy i keep him so long with my questions that are so redundent at times, hehe Anyhow, If it was not for all of you i would be alone and if it was not for the hugs and cheers and every post i have receved in this forums who knows what condition i would be in. So it is ok to post like that and i care for you all very much and again i am thankful! I will also be not getting just CT scans of the lungs next time and though they may say thats all that is needed *though i think Dr Forscher will agree with me* i will be again getting full scans i cant sleep not knowing and if i have to pay for it myself i will if need be
BTW Dr Forscher does have this forum now and i think will be reading this so *waves and laughs* yes i know i am a handfull, hehe <3

When you read my last post I am a bit worried that the FDA will not aprove this drug even if it works and maybe because it does work if that makes sence... do you think they would do such an evil thing?

Anyhow, i will be seeing Dr Foshag *chest and rib* surgen tomorrow and also a follow up on my radiation of the right calf with Dr Hakimian who i call the bear because he is a huge hugger. He is also a sarcoma survivor so this makes him family

I am very lucky i feel that i have this group of doctors a few minutes away from me. If i am going to make it thru this battle i will need the friends in this forum that are honest and loving and my family and these doctors. and as you said my aditude and it is back btw <3

I love that book btw and i have read it and what a wonderful book it is for everyone even family of a cancer paitent.

In healing hopes for all and hugs!
Amanda

[Bonni Hess]

Hello again dear Amanda,
Thank you for keeping us updated and for your very kind expression of appreciation for the researched and anecdotal information and the candid personal input which is shared on this Forum. Certainly it is vitally important to be as well informed and knowledgeable as possible in fighting this disease instead of remaining blissfully naiive and making critical decisions based on erroneous assumptions or information, but I know far too well how very frightening the harsh facts and reality about this disease can be. I am glad that you have regained your incredible emotional strength and are now back on your "war pony" and moving forward in a positive direction . I am SO happy and encouraged that Dr. Forscher's review of your most recent CT's indicates that there may not actually be any change in the size of your lung "nodules" which remain unconfirmed as ASPS mets. Regarding your question about why your ASPS seems to be "growing oddly very slow", ASPS is typically a relatively indolent (slow growing) disease compared to some of the more aggressive types of cancer. From the standpoint of slower disease progression this is a very positive thing, but unfortunately slower progressing cancers are more resistant to most traditional chemo treatments. I am grateful that Dr. Forscher is so patient, caring, and responsive to your questions and concerns. We have always felt that it is essential to be very proactive and to come prepared with any questions or concerns which may have arisen regarding your disease, your scans, and potential treatments. I understand your emotional dilemma regarding your ineligibility for the Cediranib Trial if your lung mets are stable because it seems that it is always best to begin a treatment when your disease is stable and your immune system is as strong as possible rather than in a period of growth of the disease, but since the Clinical Trial protocol requires active tumor growth, I think that you should definitely Hope for continued stabilization of your tumor growth as you await FDA approval of Cediranib or perhaps the development of another promising systemic treatment and prayerfully a cure. In the meantime, I am grateful that you are moving forward towards scheduling the resection of your growing rib tumor, and that your plans for the surgery to be done at the end of this month will allow you to share Thanksgiving together with your young son, and to be recovered enough to enjoy the Christmas holidays with him. My most special thoughts and healing wishes continue to be with you dear Amanda. Please take care and stay strong, letting Hope continue to lead you through each day.
With more hugs, deepest caring, warm friendship, and continued Hope,
Bonni

[Amanda]

Hello all
Ok today i met with my chest surgon Dr Foshag and we will be removing the rib tumor i think about eight inches of my 8th rib i am guessing on the amount and then while he is there he will be removing the four things in my right lung and then stapeling them. the largest in my lungs is on the right side and it is 5mm, 4mm, 3mm. 3mm from my right lung. In a weird way i am excited about getting them out and then finding out 100% if they are ASPS. They are all still stable and I was wondering has anyone else had stable mets and staples done on there lungs?

I guess the two on the left side that are 4mm, and 2mm will stay and i guess we will see. But, after we do this i will be other then the two on the left side clear!

I will be having this done on Dec 2nd so i can be better for christmas and my lil one

Its weird why am i so excited about getting this done?

Anyhow, please let me know what you all feel about this because i would really like to hear <3

In healing hopes for all!
Amanda