Still fighting in Houston

[Jaxon2007]

Doing radiation on pelvic as cancer has consumed my pelvic and the pain is very bad. Did the liver biopsy last Friday and results in about 5 business days. Hopefully it will tell the drs what is feeding my cancer as nothing has worked. Still in Houston! I will keep all you fighters updated. Prayers needed......

[Jerseygirl45]

I had radiation on my pelvic area my right shoulder one ribs. I was in so much pain. But the radiation 5 treatments took most of it all away. I do not take anything for pain. If I have to take something once in awhile I take aleve. You will feel better after radiation. Good luck.

[Jaxon2007 in reply to Jerseygirl45]

Thank you Jerseygirl45. I am almost pain free now. Just waiting on results of biopsy, figure out treatment and I want to go home. Been here about a month now. Nothing to occupy my mind, can't wait to get back to work.

[blms in reply to Jaxon2007]

Did they do tumor sequencing

[Jaxon2007 in reply to blms]

They didn't say if they did, but a good question to ask, thank you!

[blms in reply to Jaxon2007]

I would ask! NIH suggested to me. Definines YOUR cancer

[blms in reply to blms]

Then they may or may not have specific treatment

[kit5]

hi friend! just remember that this is just a chronic issue and they are continuing to find ways to treat... i am so sorry that you are in pain and that you have to wait on pins and needles for a biopsy result! that is the worst. just keep breathing deeply and know that md anderson is going to do EVERYTHING they can to fix you up! we sure got dealt a shitty hand... but remember that somewhere someone has it way worse. you have access to the best oncs around happy sunday and keep posting. i am cheering you on from san francisco!!

[Jaxon2007 in reply to kit5]

thank you kit5, I will keep you posted

[Jaxon2007 in reply to kit5]

Diagnosed as triple negative, which I tried to tell oncologist in amarillo that it could have changed from original and he refused to believe, so one whole year of being treated for the wrong kind of cancer. Will have to have port put in again and chemo until it stops working. Told that each treatment I'm on will last less time than the previous. Have plans to go home tomorrow and since my boss is getting ansy will have to continue treatments in amarillo, with a different oncologists conferring with my one in Houston. Time will tell!

[kit5 in reply to Jaxon2007]

i am sorry to hear that. this just really sucks all around. i too had er/pr+ originally and the last new lumps look triple negative. my dana farber doc said she'd not consider me ever triple negative and my onc in sf said that i can qualify for both sides of treatment options...so sounds like there is still debate about how cancer can mutate. i don't like that they put on an expiration date...all i can say is to chase away negative thoughts and keep on breathing deeply and enjoying each moment. is there no clinical trial they can put you in? did you push for any other options...sometimes it pays to ask the same questions over and over! i am going to go golf now (despite the horrible smoky air) and will say an intention or two for you. don't give in to the negative!! hugs and lots of love to you.

[SeattleMom]

All my prayers tonight from Seattle, Jaxon! God bless you!! ❤️❤️🙏🏻🙏🏻 Linda

[HopeinNJ]

❤️🙏❤️🙏

[123048]

Good luck sweetheart ❤️

[Swtberry]

Praying for you from college station TX. Be strong my dear. I too had pelvic radiation, 10 rounds 3 weeks ago, pain almost gone.

[blms]

Prayers and positive energy being sent your way! MD Anderson the best —so go from there!! We are with you sister. We understand your pain and emotional stress. So very sorry you are going through this stage of difficulty

[Hidden]

All good thoughts coming your way. So glad the pain has lessened and hope that the biopsy results allow a firm plan for further treatment. Keep in touch

[Jaxon2007 in reply to Hidden]

Thank you and I will keep in touch!

[Hidden]

I am sending my best intentions to you hoping that your new treatments will be successful and that you’ll have many stress free years ahead. 💕

[Selmac]

Prayers for you.

[Kimr2081]

Prayers coming your way!. Hang in there!!

[Jaxon2007 in reply to Kimr2081]

I'm trying, I just want to go home and back to work. Biopsy results either Wednesday or Friday and maybe then drs can put me on some kind of treatment and I can go home. At present I am on nothing as the drs haven't found anything to work on me.

[Kimr2081]

I know its hard. I totally get it and it must be frustrating that they can't find something to work. There is no place like home and hope you can go soon. Hugs and prayers coming your way.

Just a thought but if they can't find something to work for you I would check out Chris Wark and Kris Carr. A couple of cancer thrivers that are very inspiring.

[Jaxon2007 in reply to Kimr2081]

I'm really sick tonight. Throwing up everything. One more radiation treatment tomorrow and praying biopsy results known. I pray they find a treatment for me....

[Kimr2081]

I am so sorry. I hate what we all have to go through. I will continue to pray they find a treatment for you. 💕

[Jaxon2007 in reply to Kimr2081]

I'll keep up posted and thank you!

[NPmary]

Radiation reduced my pain greatly (got better and better in the months that followed), hope the same for you. Praying for you. Mary

[Jaxon2007 in reply to NPmary]

You mean even after the radiation it kept getting better? I did eight rounds and still in some pain.

[NPmary in reply to Jaxon2007]

It did for me, l started having less pain slowly maybe over 6 months afterwards. I still have pain now but not as often or as horrendous as a year ago. Hoping it gets better for you. I was also concerned that if l had horrible pain later would l be inelligible for palliative radiation? (Im a nurse practitioner and know radiation is really good at treating this ,kind of pain). I was told if l needed it in the future l could still have it done.

[Jaxon2007 in reply to NPmary]

Thank you so much, its good to hear that!

[NPmary in reply to Jaxon2007]

♥️

[Partia]

Prayers up!

[Jaxon2007 in reply to Partia]

Thank you!

[lisafromatx]

Praying for my Texas sister from Leander. I WISH I could go to MD Anderson but my BCBS of TX insurance won’t cover:(. Go figure! Up next is a PET since my tm’s are on the rise again. I hate being controlled by cancer!

[Jaxon2007 in reply to lisafromatx]

I'm still not on any treatment. I don't know what the problem is other than the oncologist in Amarillo hasn't received all my records from MD Anderson, and MD Anderson is the one that told me to go back to Amarillo and they would work with them......so frustrating.. I have BCBS, must be a different type. Mine has a 5k deductible, but heck, that's not even a day's treatment. Praying for you too my Texas sister....

[lisafromatx in reply to Jaxon2007]

I’m headed to by bff’s wedding...when I get back home tonight Ill post a letter I send out when requesting my records...I usually get them quickly when I remind them of the legal timeframe in which they must send the records... what a pile of poop making you wait! Next time get the copies before you leave and hand carry them to the new provider

[Jaxon2007 in reply to lisafromatx]

What's the legal time frame for the records

[lisafromatx in reply to Jaxon2007]

see below...15 business days. Call them every day and say...it's now been XX business days...when can I EXPECT you will send the records? Remember...you own the information...they only own the paper that the information is recorded on.

[Jaxon2007 in reply to lisafromatx]

Still no records, still no treatment, each day my cancer spreads...

[lisafromatx in reply to Jaxon2007]

I got dealt some bad news yesterday...my Tm's are up again and I'll need another PET. BOO! Here's what I send along with my release and record request...Hope this helps.

Enclosed please find a properly completed and HIPAA compliantPatient Authorization for Release of Medical Information consent form as required by Federal and Texas State Law.

Pursuant to the Texas Administrative Code, Title 22, Part 9, Chapter 165, RULE §165.2:

(b) Deadline for Release of Records. The requested copies of medical and/or billing records or a summary or narrative of the records shall be furnished by the physician within 15 business days after the date of receipt of the request.

I am letting you know that in no uncertain terms, if my records are not sent in the timely manner as prescribed by law delineated above, I will immediately file a complaint with the Texas Medical Board.

[lisafromatx in reply to lisafromatx]

I should also note that I send my request both in an e-mail and snail mail certified with a return receipt...that way if I do have to file a complaint with the medical board, I have proof of when they receive the request.

Good luck! I'll be happy to help in any way I can. It's absolute BS what these docs do or rather don't do.

[Jaxon2007 in reply to lisafromatx]

Thank you so much, I'll keep you posted

[Jaxon2007 in reply to lisafromatx]

This is great, thank you

[lisafromatx in reply to Jaxon2007]

any time sister...any time:))). Love from Austin!