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

[D.ap]

Hi Amanada

I am so sorry to hear of your continued pain and discomfort from your surgery
I found a link and I am trying to figure out the surgery you had..?

http://www.cancerresearchuk.org/cancer- ... s#mandible

Do you wear glasses?
The reason I ask is I know that my glasses, which I just started wearing 5 years ago , put pressure on the mastoid bone and causes me great discomfort some days. A miner adjustment helps me. I know that you have a lot more of a healing area to contend with but just a thought..
I hope the days to follow help with a nerve block.
Are they about ready to take a look see of the jaw area again?

Love
Debbie

[Amanda]

Hi hun <3
I do to read an its funny yu ask that.. ever since my surgery i have had worse vision! I will read this link in a few ty <3 i am laying down for a lil )

I am still 15 minutes later reading this! Wow hun ty!!! This is wonderful an more information then my surgen has ever given me!
I am partial removal of jaw bone an lymph by ear on right side also.. they used an artery from my left leg and the bone to fix me up an i am starting to look normal me
I mean with the scar an the things they had to do to save my life i am looking darn good.. wish the pain would go away

Then maybe mentally i wouldn't be so sad an angry...

I am usually happy happy an never angry for longer then 5 minutes seems a waist of time to be mad for any longer lol also depressed i had no idea what it meant till now
I want to run away so my son an husband don't have to live around me I am holding there lives back an depressed that my son had to spend the summer seeing mommy cry in pain That devastates me! I used to see that with my mother who also had cancer breast! An boyyy are we lucky we have cancer now! 40 years ago it was macob what they did to cancer patients! They had my mommy on a chemo called Red Death I told my medical onc i feared him for the chemo an why an told him about my mom an red death He said he understood <3

Ok to bed pain starting again worse xox

[Olga]

Amanda, I am so sorry to hear about the level of pain you have to endure. I wanted to remind you to talk to the pain dr re. gabapentin - may be it is the drug you need to help with the damaged nerves, Ivan has these spasms/shouting pains after one of the thoracotomies and it helped him in about 2 weeks. Ask him if you could try it - for Neuralgia cased by the surgery.

[Bonni Hess]

Dear Amanda,
I am so sad and sorry for your continued post-op pain and suffering and am so Hopeful that you can find an effective treatment to help alleviate it. Heartbreakingly, Brittany suffers similar chronic debilitating pain from her spinal surgery six+ years ago. Despite regular consultations with a highly respected and very knowledgeable Seattle oncology pain doctor and his pain team, she has discouragingly been unable to obtain complete pain relief, but her pain is thankfully somewhat reduced with a drug cocktail of high dose opiates including oral bucal fetanyl which has proven to be the most effective for her. Additionally, marijuana which is legal in Washington helps her relax through the pain. She has also found some success in physical therapy, hypnotherapy, and accupuncture. Her spinal surgeon could not offer any treatment suggestions since her pain is caused by not only nerve damage from the major spinal surgery but also the loss of a third of each of seven vertebrae which are necessary to provide neck and spinal support. Instrumentation with surgical placement of rods and pins was not done because we and the surgeon wanted to try to preserve Brittany's neck mobility and quality of Life since instrumentation would have resulted in her being unable to move her head up and down and side to side greatly restricting and compromising her ability to have an active Life style. We had considered surgical implantation of a pain pump, but unfortunately ASPS patient Jordanne Gerbing did not find it to be very successful and ultimately had it removed. Brittany did obtain some post-op relief from the Gabapentin that Olga suggested and I too encourage you to pursue it. In the meantime, we continue to aggressively search and research for other pain treatment options and I will share any new treatments that we find with you. With all of the progress being made in medical treatments, we continue to hold tight to Hope that someday very soon more effective pain treatments will be found. I know and understand very well your level of frustration and depression because it is extremely difficult to remain positive, strong, and upbeat when you are dealing with chronic pain which can weaken and exhaust you physically and emotionally, in addition to the immense stress and anguish of fighting this insidious disease. I suggest that you possibly pursue obtaining anti-depressant meds from your doctor if you are not already taking them. Brittany was very resistant to taking anti-depressants for many years despite all of the ASPS challenges and heartaches she was suffering, but she finally agreed to at least try an anti-depressant and she has found that Citalopram is very helpful for her in helping her to cope with everything emotionally. I Hope that some of these suggestions based on our anecdotal experience with Brittany's chronic post-op pain will be helpful for you and provide you with some pain relief. I Hope too that you have now recovered from your lung met Cryo and that things are moving forward with your treatment plan for your other concerning lung mets and your suspected adrenal gland lesion. Please take care dear Amanda, feel the embrace of my gentle hugs, and keep in touch as your pain and time allow.
Sharing the heartache of your continued severe pain with deepest caring, healing wishes, much love, and continued Hope,
Bonni

[Amanda]

HI
I am taking Gabapentin *spelling* an it makes me sleep ... I zone out to a stoner after about an hour after taking it..
We call it the gabba gabba pills lol
I am 200mg at nights. we were doing it three times a day but i was asleep all day an very upset at that!
I would rather be awake in pain then sleep my life away :/ Yes, the pain is horrid an times when i could sleep all day were very needed... But, I need a solution that i can sleep at night an get up an be me again
Has anyone tried THC? I was told it is great for pain like this :/
But again there is that horrid stoned feeling
How much a day was Ivan taking? was it spread out?
I think thisi puill is why i have also lost so much weight... It makes my tummy weird :/
well sleepy or not i think we need to start at 300 a night dose.
My whole right side of my body is going into a nerve war!! My sciatic nerve went wild the last few nights! the last few nights woke me up an OMG OUCH!!!
Maybe we need to go to 300 ...
I was not shocked whrn i googled what i was feeling an it came back as sciatica
Both legs have had huge surgeries an the rib removal...
I hope at 90 i dont look like a twisted straw
Yes, my family lives into the 90's... but i dont think they went thru what i have that takes a huge toll on life...

Ok, hugs to all <3

[Amanda]

Hi Bonnie <3
Yes, this fight after 5 years is taking a huge toll on me an my fight it almost gone
And depression yes i have it now an i hate it.. an i agree with her i dont want to take any thing also! o the pills make her sleepy?
I can take a child dose of a medication an i will sleep
I will ask my Dr about anti depressant :/ Oh i hate to do that BUt i will because i am at the end of my rope!
Fighting with cigna still!!!! Is making all this worse an they know it an i swear are loving it!

Bonnie, what is she taking an how much a day? Is it letting her live her life an not sleep all day?

[D.ap]

Hey there
How was your day ?
Wanted to ask you. Are you experiencing any blistering of your back or lower trunk ?
Shingles can cause sciatic spasms
The weakened immune system
I hope that you are feeling better today

Love
Debbie

http://www.medhelp.org/posts/Neurology/ ... how/513838

[D.ap]

Amanda, I am so sorry to hear about the level of pain you have to endure. I wanted to remind you to talk to the pain dr re. gabapentin - may be it is the drug you need to help with the damaged nerves, Ivan has these spasms/shouting pains after one of the thoracotomies and it helped him in about 2 weeks. Ask him if you could try it - for Neuralgia cased by the surgery.

I feel strongly that Olga is on to the problem
Look into the Neuralgia issue as well as other issues
Good night
Debbie

[Amanda]

Hello <3
I am still fighting with a paid cigna PPO plan... bastagez1
They broke the new health care act and also went into bad fith when they were lying to medicare an blue cross saying they were not first payer when they were .. i have it all documented!
I am still looking for a lawyer that is not a jerkface to help me! If anyone knows of a lawyer that could help me with cfigna that would be awsome! Medicare is going after cigna thru there reclaim area.. they were calling an lying to medicare an motion picture blue cross. a few doctors are slowly stoping excepting cigna. they seem to be denying payment to doctors an if you have cigna i pray that they stay on the level an stay in the legal contract an pay the bills they are sopost to be paying!
i cann;ed the state insurance controler an i am filing a care! I talked to them on the phone for aboiy an hour they said that i was right two counts of bad faith an harasment of disalowing scans for a stage 4 cancer paitent breaks the Obama health care act!

Well, please msg me thry the provate msgs to give me any legal referals.. i could really use the help ;9
WHEN THEY WERE harassing me a few weeks ago i may have had a stroke we are looking into proving this an evidently they do have tesrs

also motion picture blue cross records calls an so does medicare an it will be evident that cigna is lying!
I have cigna reference numbers an paperwork sent to my sonds dr refussing to pay an lying over and over!

I informed cigna that if i have to now have an open surgery instead of cyro on the adreanal gland i will rock them!
They have pished it out now an they have slowed my treatment by a month an a half now all taped an kinda os notes UCLA is keeping when ever they call... Cigna is no longer a reputable company Please do not get cigna insurance till you are 100% sure they will not get all sleezy an do to you what they are to me! An fighting with them is terrable! My Pain Dr said it is "Toxic to me an he saw the effects" I think what bothers me most is they are resfusing to give me a decloration so medicare an motion picture will be first payers! I wouldnt ever have these problems with them!
So looks like i made a huge boo boo some times to much of some thing even health insurance can be super bad

[D.ap]

Hi Amanda
Just checking in to my extended family
How are things going? You all camping or what for fun?
Listening to Moody Blues and wondering how the heck you are doing??

Love
Debbie
Ps check your PM

[Arch]

Dear Amanda,
I'm so sorry to learn about the pain you are having to endure. I came to this site to see how all of you were doing and was sincerely hoping for news about continued stability. Take care and continue to stay strong..

Arch

[Amanda]

hello
This will be short an I will try an post an reply tomorrow
I dogged a bullet!!!!
I was at home and fell felt odd asked my husband to help he came right home.
fIRST the ct scans of brain I had missed a 2.3 tumor!!!!! I was blessed I had one of the best brain surgeons right thee an iris all gone! I am 100% ok
Anyone that has followed me an only done ct. stop now! MRI with contrast or I would babe been dead in a few days,,,
It was laying like a twin brain tumor on my whole frontal lobe !!!

I will be now scanned every three months


And brainy me ignored the horrid bone pain an it was again cancer
So I am also healing from a huge orthodox bone cleaning

I'm only alive by the graces of gods and angeles

Ok, well I need to rest my head no stress or excitement

Good night little family an loads of love!

Ivan omg it was over 3cm if I remember right lol

[D.ap]

Rest our friend
I am so, so, so did I mention so glad you are ok!!

All my love
Debbie

[Kathy]

I second what Debbie said. So thankful you are okay!! Wow!

[Bonni Hess]

Dear Amanda,
I am so deeply sorry for all that you continue to go through with your increasingly challenging and very courageous ASPS battle, but am extremely grateful and relieved that your relatively large brain met was resectable because concerningly if it was not able to be surgically removed because of the location in the brain it may have been too large to be responsive to Gamma Knife.
Thank you for finding the strength and energy to so thoughtfully write to update the Board and to share the critical importance of having regular brain MRI"s and NOT just brain CT scans which you have now heartbreakingly learned are NOT adequate for detecting ASPS brain mets at the smallest most treatable size. Did you have any symptoms of morning headaches, nausea, arm and/or leg numbness, loss of balance, confusion, etc. prior to "feeling odd"? It infuriates me that many doctors inexcusably/inexplicably do not/will not schedule regular brain MRI's for ASPS patients unless the patient is symptomatic which is then tragically sometimes too late to successfully resect/treat the brain met. PLEASE everyone on this Board who is reading this, heed Amanda's warning and do not be naiive or become complacent about having regular brain MRI's which should be done at least once a year if you have no previous history of brain mets, and every three months if you have already had one or more brain mets. ASPS can, and tragically too often does, metastasize to the brain!!
Please rest and give yourself and your precious body time to heal from all that you and your body have been through the past several months dear Amanda. Stay strong and feel the strengthening love and support of your ASPS family on this Board who all care so deeply about you.
With gentle hugs, healing wishes, deepest caring and concern, much love, and continued Hope,
Bonni