Charity from Ontario - Dx 2002 - MIA

[Bonni Hess]

Dear Charity,
It was so very good to hear from you, and so very thoughtful of you to update your current situation in the midst of all that you are going through and dealing with right now. I am grateful that the radiation treatment to your knee was successful. Was the knee area tumor on the bone? I am so deeply sorry and concerned that the radiation to the C5 cervical spine was unsuccessful and that the tumor is spreading and the pain increasing. As you may remember, last year Brittany had a cervical/thoracic area spinal muscle tumor which was partially resected and then treated with post-op radiation. Heartbreakingly, three weeks into her spinal radiation treatment her increasing pain and an MRI showed that the radiation was not working. The tumor was rapidly growing and spreading up and down the spinal cord and was threatening compression of the spinal cord. A second very aggressive surgical resection seems to have been successful, but Brittany continues to suffer chronic post-op pain for which the pain cocktails provide only minimal relief so we are now pursuing possible Botox treatment for better pain control. I understand that you, like Brittany, have multiple areas with metastases, but it seems that if it is surgically possible, resection of the C5 tumor should be strongly considered by your doctors to prevent possible catastrophic spinal cord compression as well as to provide pain relief from the tumor because this is a quality of Life issue. I also understand that, also like Brittany, because of your widespread metastases, a systemic treatment is needed to try to stabilize the progression of the disease and to systemically shrink/destroy the tumors. Have you explored the promising Cediranib Clinical Trial that is available in Toronto? Also, I know that you are opposed to undergoing chemotherapy but, as 'F' shared with you, Gemzar used alone without Taxotere seems to have had very successful results for at least one ASPS patient, so it might be worth at least considering and discussing with your oncologist. My special thoughts and best wishes will be with you on Thursday for only good news results from your last week's heart scan, and I will continue to hold you very close in my heart and prayers as you continue your courageous journey. Please take care dear Charity, know how deeply I care about you, and keep this Board updated as you are able.
With gentle hugs, special caring thoughts, and continued Hope,
Bonni

[Fictional]

p.s. re: nerve pain - Charity,

Conventional pain medications are often poorly effective for nerve generated pain - nerve pain is often described a sticking (like a knife), jolts of electricity, or burning. If this is the source of pain, low dose anticonvulsant medications may help more than narcotics. Examples include low dose Neurontin, Tegretol, etc. Also there is something called a lidocaine patch that can be applied to a painful area - it is a local anesthetic - that may also help without causing any system (whole body) side effects.

It is surprising that general doctors and oncologists don't know about what works best for nerve pain - only a small number end up getting referred to neurology, but those meds usually help. If they don't help enough, nerve blocks can be given too...

[Beth]

Dear Charity,
I am so sorry to hear of the pain. Keeping you in my prayers, especially, that you will gain the strength to take Bonni and 'F''s suggestions back to your doctors -- my hopes and prayers are with you,
Beth

[Charity]

Hi everyone. I am very familiar with nerve pain siince my amputation in 2003.I have so many pills in my cabinet including neurontin,lyrica and oxycontin.I know the pain very well. It was and I am hoping it wont go to the spin, however my chest pain has increased and surgery is not an option in my province. Where do I start? Quality of life and mobility are my priorities,so I will take a trip and figure out what treatments are available to me available to me in Canada

[Olga]

Charity, you should definetely ask about the cediranib trial again based on its activity in ASPS, some of our members are enrolled recently Brittany in Edmonton and the other person in US.

[Bonni Hess]

Dear Charity,
I am so glad that you are going to try to explore the availability of treatment options in Canada. I will be holding very tight to Hope that you will find one which will be effective for you. Did you receive the results of your heart scan at your oncologist appointment on Thursday, and did he offer/discuss any treatment options with you. I continue to follow your courageous journey with deepest caring and ongoing Hope, and will be anxiously awaiting your next update. Please take care dear friend.
With special caring thoughts and continued Hope,
Bonni

[Ivan]

Hi everyone. I am very familiar with nerve pain siince my amputation in 2003.I have so many pills in my cabinet including neurontin,lyrica and oxycontin.I know the pain very well. It was and I am hoping it wont go to the spin, however my chest pain has increased and surgery is not an option in my province. Where do I start? Quality of life and mobility are my priorities,so I will take a trip and figure out what treatments are available to me available to me in Canada

Have you tried gabapentin? The one time I had post-surgical nerve pain it totally took care of it. It takes half a week to build up in the system before it takes any effect, though.

[Charity]

Hi there everyone,

Another year has gone by as I celebrated my birthday last month I am always happy to be alive. My pain Doctor told me last week I look great with the amount of cancer I have in me. I have finished my radiation treatments for now. I have a bit of pain at the site where I had my left lung resection in 2006 and my spine and neck where I have had radiation so I have doubled my Fentalyn patch and it seems to be working. It does limit which additional medications you may take since its a narcotic.I also tend to get nausea every 3-4 days and have lost over 20lbs. which I don't mind.I did take Gabepentin a few years back it lessoned the pain a bit.Otherwise I am still keeping it going.

[Olga]

Charity - Happy birthday dear friend!
I hope that you have seen the news that cediranib is avail. on a trial in NCI in Bethesda and they accept all the people who want it. Being the Phase 2 trial, it is easier to be on for the people from Canada as you only need to spend a time there in the beginning and later go there once in a few months they even pay for the trip once you are accepted. So if you are able to travel, may be you should consider contacting them? It is here:

http://clinicaltrials.gov/ct2/show/NCT00942877

[Beth]

Dear Charity,

Happy Birthday! My son lost much weight over the years, and not until he was admitted to the hospital a week before he passed away did we get to see a nutritionist who asked why he was never advised to have a feeding tube to his stomach. He would have had a much better nutritional status and much more strength for the fight if this had been the case. So I'm sharing this fact with concern for your endurance and continued physical strength in your battle.

God bless,

Beth

[Bonni Hess]

Belated HAPPY BIRTHDAY wishes dear Charity! What a very special joy and great relief it was to hear from you. You are an amazing woman and a source of great encouragment, inspiration, and Hope to everyone as your body continues to survive the increasing challenges of this insidious disease and your courageous spirit continues to fight and defy it. I am so sorry for your continued pain, and Hope that you will find something which helps to alleviate it, or at least to help control it. Heartbreakingly, Brittany also suffers from ongoing chronic pain from her now more than 20 surgical/ablation/radiosurgery procedures. Her most severe and debilitating pain is from her two spinal resections last summer which removed a lot of spinal muscle as well as 1/3 of each of seven cervical and thoracic vertebrae. She is never able to obtain full pain relief, but the pain is somewhat reduced by Oxycodone, Valium, and oral Fentanyl Citrate lollipops. She also is experiencing concerning weight loss having now lost twelve pounds from her already thin body during the past four months, and if this continues we will certainly explore Beth's very kind and thoughtful recommendation. At the time of your last update you had said that you were going to explore the possibility of Cediranib treatment. Did you pursue this treatment possibility with your doctor, what treatment are you currrently receiving, if any, and have you had any recent scans? Please know that you are always in my special thoughts, know how very grateful I am that you wrote to update the Web site, and know that I am celebrating along with everyone else your recent birthday and wishing for you a coming year of healing miracles, renewed good health, and abundant happiness. Take care dear friend and keep us updated as you are able.
With Happiest Birthday best wishes, special caring thoughts, and continued Hope,
Bonni

[Fictional]

Happy Birthday, Charity!

It's so nice to hear from you. It's nice that the pain is tolerable and you are feeling relatively well.

I would echo Olga's suggestions to look into Cediranib - and if not that one - there are others that also look promising with relatively low side effect profile. Sutent is also available and some ASPS patients have been on it with relatively low side effects - but with efficacy longer than a year (and still on). These newer 'targeted' drugs have a lot less side effects than old chemo, and it looks as if they are more effective too.

Sending blessings your way-

'F'

[Bonni Hess]

'F',
Since Charity's birthday was in August, and there have concerningly not been any Board updates from her for the past almost four years, I am perplexed about your today's post. Have you had recent personal contact with her, or are you inexplicably responding to her post from four years ago?
Perplexed, Hoping for an explanation for the basis of your post, and holding very tight to Hope that Charity is actually doing alright and "feeling relatively well",
Bonni

[Olga]

Bonni, "F" was not responding to the old post, but someone called "Anonymous" bumped old post by "F" - it was posted a long time ago, at about the same time that my post was done (apparently "F" account is not active and she can not post anything.). The new format of the board allows the old post to be bumped and it gets on the top of the list as new and appears to be done now. I am not sure as how to disable this function.

[Bonni Hess]

Thank you for clarifying this perplexing issue Olga. Since there has been no Board or personal contact by Charity for almost four years, I fear that she may have lost her courageous battle, and this "bump" by "Anonymous" seems to be an extremely cruel and meanspirited invasion of our Board.
With great disgust towards the inexplicable spam actions of "Anonymous",
Bonni