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

[Arch]

Wow..that's great news ! We are very happy for you. Take care dear Amanda and as the others here have advised, get back to living your life.

Regards
Arch

[Amanda]

Hello
I am sorry it has taken a few days for me to respond i needed to think... I know it is odd but I feel in some ways as i am waking from a nightmare and trying to take a colective accounting of my life and the directions of it now that i see things in life a lot more clearly and differently! I dont know if anyone will understand but as odd as it sounds it is a bit unsetteling. Today for the first day i stepped away and said i dont have cancer and it didnt feel weird and i gardened and to be honest i over did it and am hurting... *sigh* it was worth it! I sat and cleaned and thought about so many things...

I have spent over a year in the forum with all of you! Getting care and help, hugs confedence life saving information! I am not sure if you all relise this so if not i will clearly tell you that many lives are either saved or lengthened by the care you all give here! I only have one regret that i didnt listen to Olga about the radiation, lol Every morning i take that first few painfull steps i think "Why the heck didnt i listen to Olga" lol

You have all been there for me thru the worst time in my life!
I care about everyone and watch the posts and am concerened about all the paitents and family dealing with ASPS.
Though i am sure it will be a very good idea for me to not check the forums every day i will do this.. Yet, i will be here every few days and at the longest a week here and there, lol
Some of you have my phone number and i am still a call way, but you already know that
I have no idea how long i will be free of this devil and if it will come roaring back or if i am blessed for some reason and it is gone.

This forum and its posters are a group of very special people that i care very much for.
Cancer gave me a few wonderful gifts to add to my life and one of them was the posters here!
So I am staying to be here with the people that were here for me and try in any way i can to help

*hugs*and *hope*

[Anders]

Hi Amandan
So happy to read this wonderful news... i injoy

[jcs2007]

Amanda,
That is such wonderful news regarding your latest scans. Keep us informed as you monitor every 4-6mos.
Peace and Blessings,
Cindy

[cachabamba10]

Hey, That is awesome, way to go Amanda.

Sincerely;

Mario E. Arevalo

[Amanda]

Hello everyone!
I hope that everyone had a happy bunny day!

I have been having some medical problems from my surgery and till yesterday when i talked to Dr Foshag i was scarred! I am bloating and after eating i look like i am 4 months pregnant and it is on the right side and pushes on my lung where the surgery was and makes it feel like i am having problems breathing. IBS is what they are saying. I am also re gaining feeling in my chest and nervs are starting i think to wake up this is why i guess i am having chest pain in the center of my chest a lot and wow guys it hurts so much when it hits! I get short of breath also at times almost like an astma feeling. Pain meds do not work at this stage and anti inflams and ativan are my only help right now.. Please, any help in feeling better would be greatfully excepted!

Ok, this info made me not so happy and though it is still good news of stable or shrinking it means not realy NED because though the things on the left side seem from the new films to have shrunk it could also be from the film. So this means that they are still there and unknown and are being watched When i asked him this he was quiet he had not given me the results and I guess in all my pushing of his assistant i must have miss understood there are still two unknown things on my left lung! My heart sunk when he told me this! But stable is still good and it seems that this is what many on the 15 year club also had so i am in very good company!

Anyhow, i wanted to let everyone know and also if anyone has had this type of problems after a chest surgery please post back and let me know any thing that helped you!

[Fictional]

It may be as they say, but you could also ask whether you could have pulmonary function tests to check if you have some exercise-induced asthma that could give you that out of breath feeling. No one ever heard wheezing in 'K', but with an exercise stress test (treadmill and bike), they found asthma - which got better with inhalers.

Now she uses only occasionally, but before lung surgery - she starts them up 1 week before - and after lung surgery she found that the inhalers seemed to help for the first few weeks after.

YMMV (Your mileage may vary),

'F'

[Olga]

Looks like the typical post-thoracotomy pain syndrome (PTPS) that is often found after the lung surgery. It is mainly because of the intercostal nerve injury - and you had a rib removed so the nerve trauma has to be significant. If the pain will persist, Neurontin (gabapentin) might help, Ivan was taking it for about two weeks and it helped a lot. Read on the Pubmed on the subject (post-thoracotomy pain syndrome).

[Amanda]

Hello 'F',
I will ask him about that because If that would help me i would love to have an inhaler and i would love to have this test done before i try and go back to work.
It freaked me out the first time it happened and though it has not been as bad as the first time i dont want to feel like that again. Thank you for letting me know about what happened and shring what helped and sharring!


btw, i love this "YMMV (Your mileage may vary"

I hope that your family is enjoying spring

[Amanda]

Hello Olga,
Thank you, for letting me know about the nervs and what Ivan went thru if this continues for more then a few more days i will be asking about this drug.
Did he have any problems with this drug at all?

I went into this surgery thinking it would be like recovering from my leg sx.. Wrong! This was tuff and it is taking a long time to get 100% again if that is even possible!
Everyone that has had this type of surgry to the lungs even with out the rib removal once or multable times i am in awe at there streangth ...

I hope that you are all having a wonderful spring

[Bonni Hess]

Dear Amanda,
I am so sorry to hear about all of your abdominal bloating and post op chest pain and shortness of breath. Regarding the doctor's diagnosis of IBS for the abdominal bloating, did you have this symptom/condition prior to the rib surgery, and have any tests been done which would cause the doctor to diagnose the cause of the bloating as IBS? To me the bloating seems too coincidental with the surgery, and it seems that the doctor should definitely do some tests to try to determine the cause of it. Also, regarding the confusion about the status of the two spots in your left lung, have you personally read the radiologist report to find out what it says, or are you just basing your information on what the doctor or his assistant told you? Hopefully the spots will shrink or at least continue to remain stable, but it will be important to continue to follow them with regular scans until a definitive determination can be made as to whether they are scar tissue or tumor. In the meantime, I Hope that as your body continues to heal from your surgery your pain and swelling will resolve before you try to return to work. Take care dear Amanda, keep in touch as you are able, and know that my special thoughts and healing wishes are with you.
With gentle hugs, special caring, and continued Hope,
Bonni

[Amanda]

Hello Everyone,
I hope that everyone Is having a good summer!
I have been reading the forums and have seen that so many are doing well on Ced trial and though I don't know If this Is a cure for now It seems darn close

I had my three months scans done and ...
leg Is looking great no ASPS and healing great other then the problems I have from radiation like pain and swelling and cramping. I did get new shoes though and wow It made a huge difference I went to a running store and after wearing them for about two months I would say 90% of the cramping Is gone.
MRI right calf are now going to be done without contrast every four months

Abdomen Is still clear and CT will be done next In four months.

Chest Is showing fluid from surgery lessening and healing well. There are no new signs of any metastases.
There are still five mm things In both lungs and they have not changed In almost two years now.
CT will be done In four months of chest.

I asked about another CT of brain. I am so claustrophobic that I will need to be completely put under *sIgh* if they do the MRI.
they will do it i think in six months.

I asked DR.Forscher now what. He said we watch them to see If they change ever. We have no Idea If they are even ASPS.
My surgeon has expressed the same that we do not even know If these are ASPS. He removed I think five things In my chest and only three were ASPS If I am correct.
I asked Dr Forscher If he thought they would come back and he doesn't know.

I am still a weird bloated in my tummy and on the right side *My surgery was on my right side* it hurts and have some nerve pain that at times is bad but after having about three inches of my eighth rib removed i think that is to be expected.

I started back working two days a week last week!

I will post back scan results in four months...
I truly believe that if i wouldn't have found this site and listened and learned that i would not be posting what i am today.
I am grateful and deeply touched by the posters of this forum the treatment and care and love that met me when i posted that i had been diagnosed with ASPS.
The last almost two years have been a nightmare and I don't think i would have been able to do all this with out all of you!

My love and healing hopes too everyone!
This can be beaten.. it can be in remission for years and years.. and there is allways hope!
Never let anyone tell you different because they do not know!

[Arch]

Dear Amanda,
We are very happy to know that you are doing well...good to know that you have started working again.
Take care.

Arch

[Ivan]

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.

[Amanda]

posted in ....

http://cureasps.org/forum/viewtopic.php?f=10&t=535