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

[Bonni Hess]

Dear Amanda,
Thank you for your very thoughtful, informative, and detailed posting on your rib surgery and post-op recovery experience. The information shich you so graciously shared will certainly be very helpful for any other patients who may have to undergo rib surgery. Additionally, much of the advice which you offered is applicable to any other kind of surgery for ASPS patients so that they can be as well prepared for their surgery and recovery as possible.
I am sorry that I somehow missed your previous August 11th update since we were boating and away from computer access for awhile. Please know how very happy and encouraged I am about your wonderful three month scan results, your continued recovery, and your now feeling well enough to be able to return to work part time. I am sorry that you are still experiencing post-op abdominal bloating and pain, but Hopefully this will continue to dissipate and resolve as your body continues to heal. In the meantime, I Hope that you will soon be able to resume all of your regular activities, and Living and enjoying Life to the fullest. I willl be holding you very close in my heart and most special thoughts, and anxiously awaiting your next update following your scans in four months which will Hopefully bring continued good news of NED. Take care, have a very happy and healthy Fall, and keep in touch as you are able.
Sharing your very good news with happy hugs, special caring thoughts, and continued Hope,
Bonni

[Amanda]

Hello Bonnie
I hope it in some small way helpes someone. I am feeling the same and i went to a natural Dr today to try and get help from him and we will see if that helps. I Hope that the scans will remain no sign and we will see what happens in the next set. I know how this works now so i am staying cauciously positive and know that this can change if and when it wants to so i am holding it as a gift as i think Olga put it and trying to be positive
I am reading about the trial and how well Brittany is doing *YAY*
Everyone here in my heart and prayers.
Working is a bit hard but in some ways it is helping me Ivan said to work my leg and it is helping me though at times it is hard it is working

Sending you huge hugs my friend!

[Amanda]

Hi Ivan
I am glad you are doing well also!
Ok,i started to work my leg and though *omg it hurt alot at first* i am feeling alot better! I still cant do streatches yet though in the calf it tries to start a spazm .. But, i have not woken to a spazm in a few weeks now.. I am stil limping in the morning but i think that is just how it is going to be and after taking that tumor out it is to be expected!

Good to know you are doing well!

As far as your leg cramps go... Cramps are usually caused by muscle weakness and or lack of endurance. You can try training the muscle that is cramping. After you are done your walking for the day, in the evening. It shouldn't hurt, and it may help after about 6-8 weeks.

[DottyW]

Amanda,
I have always been impressed with your upbeat attitude, you are so encouraging to others on this forum. I had not read your story so I just read your whole profile in one sitting. You are strong and amazing. You are a terrific mom to be concerned first and foremost for your little guy! A mother's sacrificial love is a gift of God.
In reading your posts it just reinforces what a roller coaster ride cancer is. If when your are in remission or even ruled cancer free those fears want to creep in. But you have not been given a spirit of fear but of love and a strong mind. I pray that you will continue to encourage others with your honesty. Especially those new to this disease and this forum. I like that you are honest about not knowing much about all of this. That's how I feel most of the time. Olga and 'F' are able to offer so much medical knowledge. Bonni has been a huge encouragement to Jordanne and myself.
When we first met her and Brittany it was a real help to see how mother and daughter interact with cancer. It's hard not to be overprotective when your child has cancer.
Do you have a strong family support? This forum sure feels like famil for some. I just hope that people like yourself that actually might be disease free will continue to post to give hope to those who are currently battling the affects of ASPS. God comforts us for the express purpose of us being able to comfort others. This is also a gift. To be able to help others along the journey.
Keep up your strong spirit of encouragement.
BTW did your ever find a dog? As I write I am dogsitting Jordanne's pug and he is snoring here next to me. He sounds like an old man. What Jordio didn't tell you is that pugs also fart a lot!
I pray that you will continue to live disease free and will never have to be on Cediranib. Although it seems to be the best hope for ASPS at the moment, the side affects are extensive and I can't see anyone staying on it indefinitely!
Blessings,
Dotty

[Ivan]

Hi Ivan
I am glad you are doing well also!
Ok,i started to work my leg and though *omg it hurt alot at first* i am feeling alot better! I still cant do streatches yet though in the calf it tries to start a spazm .. But, i have not woken to a spazm in a few weeks now.. I am stil limping in the morning but i think that is just how it is going to be and after taking that tumor out it is to be expected!

Good to know you are doing well!

As far as your leg cramps go... Cramps are usually caused by muscle weakness and or lack of endurance. You can try training the muscle that is cramping. After you are done your walking for the day, in the evening. It shouldn't hurt, and it may help after about 6-8 weeks.

The muscles are REALLY tight after surgery was performed in the area. You need to get a foam roller (google it) and do some active release on the muscles around. Best way to describe it is painful massage. And I mean it can be VERY painful. But don't worry - after a few months it will not hurt at all, and the muscle will be in a much better shape. Also keep stretching it. The two major calf stretches are the gastrocnemius stretch and the soleus stretch, usually done standing against the wall. I think it maybe worth going to a physiotherapist so they can evaluate the functionality and assign you strengthening and stretching exercises. You can do it yourself too: compare the unaffected leg with the affected leg - how much weaker is it, how much less flexible?

After each of my lung surgeries I've spent MONTHS stretching everything out and getting the full range of motion back. Strength recovers easier than flexibility in my experience.

Edit: I started a new topic regarding exercise - http://cureasps.org/forum/viewtopic.php ... 2654#p2654 - I am more than willing to offer advice about your leg there.

[Amanda]

Hello Ivan
I have been to a ortho doctor and done work the remaining problems i am having are sadly from the 33 radiation treatments.. my range is alright and it i strong after to get moving. But, the damage from radiation and the gift it keeps giving will continue for a bit still...

My chest pains and problems are because four inches of my right rib were removed and for close to ten months any movments at times would cause a pain i canot even closly describe! I in the whole from of my right rib cage am slightly gaining feelings back and where i can feel it touched is veryyy painful. My muscles also i had and still have to be watchful of because they are still getting used to this new thing to attack to that is not my bone.. i streach it all the time like a cat almost constantly now. But, the nerve pain and nerves now starting to fire again are what i am dealing with and this is a slow surgery to heal from .. it wil be i hope 100 % soon...

Thanks though for the offer

[Amanda]

Hello Dotty!
I have tried to be as translucent about my journy with this hated evil thing and came to a conclusion that i need to smile i have no idea really how long i wil be smiling for. No one does with or with out cancer.
My lil boy is the most amasing and strong and just GREAT lil hero he has been my lil rock seeing his face heals! faced with the thought of not being here to make sure he is ok is like torture and i cant even imagin the feelings you and the other parents have been going thru!
I believe in are lives the heros are on both sides..
Wow my thread is a long one and thank you for reading it and that makes me feel very good that i maybe bringing a lil hope to others in any fashion. it makes me think the hell i went thru was then for a positive reason.
My suport has been wonderful family and friends and sadly my heros were also my step mother and my mother. they both lost there lives to cancer my mother when i was thirteen and she was stil the best and fun and loving amasing woman even when all she could do was hold me and pet my head when she was close to passing the last few months in such pain. My step mother taught me to take the cancer and make it white noise in the back of your head and not to talk about it all the time and move on and live life feel it see it be it. She passed less then three months ago *sigh* to much cancer in life and others lives i pray for cures for everyone with this.
Yes, i fear scans and i fear that this will change. But, there is really nothing i can do but hope and keep moving.
lol at the dog snoring!! No dog yet sadly i am doing so much that i cant care for one right noe they are to dependent.. Plus, my cats may eat it hehe
I hope that this trial Brittany and the others are on developes into a cure.. I am so glad how it has been working for some with stability and the shrinkage..

This forum has been a place that thoughts and treatments and personal expreiences can be shared and that the indevidual can look at this information and the expreiences of others and go to there doctors armed.. some times we paitents can teach the doctors a thing or two hehe
It is the openess of all information even some thing as small as a trick for pain can make a huge difference in a life.

Ok, time for me to go to bed i have ot be up at 4:00 AM ewww and work, lol

*hugs* and more *hugs* to you both!

Sorry i rattled on so much

[Olga]

Amanda, that pain you descr. is so much as the one Ivan had after the prolonged time having the chest tube between the ribs after he had a pneumothorax few years ago. I think it was more then 3 week with the tube after the surgery and 10 days before of the surgery. His intercoastal nerve was very damaged by the tube and only after he had gabapentin (brand name Neurontin in US) it was healed after may be 2 weeks on it.

[Amanda]

Hello Olga,
I Have that pain also but it is in a different area then what i have described above. The whole comleat front side of my rib cage is what i am talking about. The tube pain does still happen but it is less and less frequent now. My tube was in for four days only if i remember right :/ Theee weeks with a tube is not fun i am sure and very very painful!! When this tube pain does hit its not fun but it last a very few seconds.

The pain in touching the intercostal muscles all of them on the front side and under my arm. This surgery though extreemly important takes a very long time to heal from and many things that others can do after a reguar chest surgery can actually harm a paitent healing from what i had done. Funny thing is this intercostal pain was also in my back and that healed first and the healing seems to be slowly wraping around to my front.. i found this odd.. four inches about were removed from my 8th rib and some mesh was placed where the rib was. I can now streach with arms up like a normal person and tip from side to side it feels so good lol. It took about nine months for this to be able to happen without making me hurt alot. I would also only do what the doctors said i could do i didnt want any damage done.

They did give me that drug and i took it home and never used it. it was offered after my leg surgery also i lost a nerve in the leg surgery and at times the pain was also bad and the odd feelings of water rushing over my leg was disturbing.

My feelings are the bodies we livein are better at healing at times when they are able to feel what is the matter in them. With the type of nerve damage i had and have for myself i have found i maybe healing faster then others. I have also re gained feelings in an area of my leg that at one point was numb. We cant say it helped this to not take the meds or not.. I think it did ...
This idea of not taking a nerve pain remedy is a very painful choice at times and i do not advise ANYONE else doing this unless it is compleetly talked over with your doctor. Pain at different times after a chest surgery and others can create other problems and also injure the healing prosses. So talk to your doctor and find your own path

[Amanda]

Hello
I will be getting my scans in three weeks done and they are saying they want to use contrast again and it is starting to now make me sick when they give me the injection I don't know if i should get the dye any longer? Anyone have any thoughts please let me know.

I am also asking for an ECHO of heart *they have never done that before*

CT of Chest only *they did my abdomen four months ago*

MRI with out contrast of knee down. This was the site of my primary.

Any info or opinions are welcome...

[Olga]

Amanda, your team of doctors looks very good to me, most of what they done before was really the best management plan for your situation so may be let them have it their way, as a demonstration of the complete trust:(
Look, they even do an MRI of the primary site - few of the people here can say the same comprehensive follow up was done for them. What about brain MRI?

[Amanda]

Hello Olga,
Yes, they have been very good and possitive. Thank you for reminding me about that Its so hard to trust! In me and in them really at times... Dr Brian wants my leg done every i hope six months after this and i am also hoping that the chests and others move to six months. But, after talking to Dr Foshags office he wants this contrast for the chest.. I have no idea what to do about the contrast it seems to be now making me sick But, they have to see whats going on in there ...
No real change in two years i am holding on to that so hard right now and have felt so strong till making the call today to see who will be ordering these scans.
I asked about the ECHO and my doctor said that a regular ECHO will not show the heart and that they go inside to do this! Do you think this is some thing i should even push right now to have done :/
I have only had CT of the brain i am so deeply frightened of the MRI that even on drugs i cant get in it I have had i think three or four CT of brain now and all clear.
I am going to ask them to put me to sleep some time next year for the brain MRI.
The contrast thing though worries me :/

Amanda, your team of doctors looks very good to me, most of what they done before was really the best management plan for your situation so may be let them have it their way, as a demonstration of the complete trust:(
Look, they even do an MRI of the primary site - few of the people here can say the same comprehensive follow up was done for them. What about brain MRI?

[Amanda]

Hello
I made a call to Dr Forscher and Dr Foshag and asked if my scans can now be moved to every six months.
It has been two years no changes except in that rib and we all know that was taken out a year and three days ago yay!
I was told to get my chest CT end of December or first week of January and then after that we will move to six months
My chest surgeon every three months though wants a chest x ray also done. i guess this is because of the surgery ?

Olga, you are right i need to trust them they have been great and they have also listened to me and of the posters here replies to me that i have brought to them and used to question my treatments / plans and offer suggestions.

I went back to my doctor that does my vitamins and minerals and he has set me up with lots of stuff my body has been thru hell the last two years and we are going to get it strong again. None of these work with cells we are both very watchful of making super cancer cells and i believe the Coq10 may do :/
i am also going back on a diet that he picks i gained weight I am not the skinny lil cancer patient i was when i was diagnosed i am a bit pudgy now lol
Seems i am not digestion right and my spleen is causing a problem so i am going to work on that and eat a certain diet for a for days or a week to make it better. He said thats why i am bloated... All i care about it stopping this bloating i am sick of the "aww she is cute pregnant" and the looks lol
I want to be ready fro any changes or for starting my life over and re taking back so many things and dreams that cancer had stolen from me! I was a fool to also let that happen cancer or not i never should have stopped my goals and dreams.. I hope that none of you make that mistake also!

Ok i am off to bed i am for some reason very sleepy the last few days :/ almost weak. maybe i am fighting a virus off :/

May all of you have a very happy and special holiday and may the new year 2011 bring a cure for ASPS!

[Olga]

Amanda, I have seen on the general SA board that some oncologists use the alternate schedule for the people with the slow growing/stable sarcomas - once in 3 month CT and the next 3 month an X-Ray.
The other thing that I wanted to suggest is the physical therapy - probably you are gaining weight because you avoid walking as much as you did before? I remember that you were complaining about the consequences of the radiation treatment. May be in the meantime that you are having no treatments and less scans - you might concentrate on the improving the walking/regaining flexibility...

[Amanda]

Greetings Everyone new and old!

I had my scans done two weeks ago and had to wait a week to hear from everyone before i felt it was alright to post!
Dr Forscher and Dr Foshag after looking said *stable* we do not know if these are ASPS or any thing at all and are so small. None are new!
We are moving to a four month scan and then to six months.

So the only bad thing is i have a gallbladder stone about 1.3 cm and they want to remove my gallbladder. Though this is not much. To me it is like one more assault on my body that feels as one cancer patient so well put it "MY body is a war field with many scars of war that Oncs battle cancer on" They were right about that and the feeling. Dr Foshag will remove my gallbladder and i am glad it is an Onc doing this and not a general surgeon. He will do the one that is a few small wholes and not a huge opening. Plus, he is the best in my opinion and if i can tryst him to go in my lung and remove stuff and then take 4 inches of my 8th rib out this is cake to him lol Also, having him do it makes me feel better he is a very good person!

Both of these oncs look at old scans and read them on there own and have there radio people look at the CT. A new doctor read my CT and when i read what he said my world re crashed in my lap!
Bonnie thank you for being there for me!
HOW did you KNOW this was going on with me, lol
Anyhow, i still will not let this loom on me again in my life because i did again for two days and cancer basically mentally stold two days away from me again and i am again pissed!

For those that do not know me i have been thru in my life my mother. my best friend and recently my step mother less then four months ago lost to cancer. It is thru these amassing woman i have this attitude and strength that at times is still very shaky and weak and they taught me to not live cancer even when it was so progressed that every moment was a trial.
"Try and keep it in the back of your head"
" don't let it take over and obsess"

An mine.. "Dont tell me to treat each day like it is my last! Do you know when your last day is? Ok, well neither do I"
That one has allways pissed me off... lol

I will try and be more active in the forums and post more!
But, i have been here reading and watching what is happening with everyone.

Prayers and love to everyone!