Horatio update: Post radiation results in

[Horndogg]

Thinking of you Tara I hope you have a good Easter.

[TaraF]

Thank you all, just a few more days. The nicer weather has been good for walking but the 50% off Easter candy has been BAD for the stress eating. lol I'm hoping the exercise is balancing out the chocolate? I'm hoping. *sighs*

The rain, thunderstorms and double digit temps though are signaling spring. FINALLY! It sucks that I'm really tired and just want to sleep right now. Go figure lol nicer weather and my energy levels are low.

[TaraF]

I just wanted to let you guys know that I got my test results and things didn't go as I expected them to but that is the way it goes when it comes to medical issues and me. Without going into great detail as I'm sure you all would like to be spared, my new Dr is a Gynecologist who is helping me (I hope) with issues that may be hormonally related to my radiation treatment. However she also performed a biopsy and has me going for some other testing as I'm having some massive issues right now. Who knew this brain cancer thing could possibly be the cause of more problems than just the cancer!

But if you think about it the brain is the main control panel of the whole body and all of my Drs have had the suspicion that my pituitary gland has ended up being "collateral damage".

[MortgageQueen]

I'm so sorry to hear about this Tara. I'm hoping some thyroid meds and hormone replacement might be in the works? Can they do bio-dentical hormones? (less side effects)
DO they think the pituitary is toast or just damaged? I can imagine the physical effects you're suffering at the moment my dear, and my heart truly goes out to you. It seems to me your body is winning some battles, but your spirit continues to triumph!
You've come through so much and you're obviously exhausted, but despite these issues, I think you're still winning. It's just in small measures. That can be discouraging no doubt, but you are moving forward, yes??
Keep us posted. We ARE cheering you on and we really care. You are and will remain, an inspiration to all of us Tara.

[TaraF]

Thank you MQ (hugs) my doctor suggested progestrone but I've refused to take any drugs of any kind until I know what ,ight be causing my issues. However, a total hysterectomy has been tossed around. I'm only going to be 35 this month but I've never wanted children so that's not a concern to me. I just want to know what is wrong with me. I'm a firm believer in finding the cause of a problem instead of simply treating the symptoms. I told her once the biopsy and all of the test results come back we can discuss treatment options at that time after there is a better idea of what's wrong with me and why.

My Oncologist thinks there is a good chance the pituitary gland might be totally toast. However, I also don't want every Dr I see assuming every issue I ever has is related to my cancer treatment either. I understand that in certain situations (such as this) it can be which is why I don't mind extensive testing.

[MortgageQueen]

Tara, you are very wise. I couldn't give you better advice than you have already figured out your self. Doctors are trained to treat the symptoms, not necessarily cure the disease. It's not their fault. That's how they are trained. . . and let's face it, they obviously do a lot of good.
However the pituitary gland is significant. I am assuming they have something constructive to suggest?

[Skippy]

Hoping you get your much needed answers.May you know an abundance of grace and peace.
Continued prayer offered for you&yours.

[KJH]

Thinking of you Tara Please take care you are in my prayers!

[TaraF]

Thank you MQ, Skippy and KJH. I haven't actually seen the Gyno but I did see my family Dr Friday and he had the biopsy results. They are negative for dysplasia and malignancy. WOOT! One less worry at the moment which is nice. It was a great birthday gift!

But the really interesting thing? Her report (I have the photocopies) are pushing for me to go on the Mirena IUD as my official diagnosis is dysfunctional uterine bleeding ( 58 days and counting and it's zapped my energy)Anyways Mirena is progestrone and I did my research not only on progestrone but Mirena itself and I came up with a Q&A to discuss with my Oncology Nurse tomorrow and the gyno and family Dr when I see them if they question my decision. But I think my oncology nurse will say not to do it.

The Mirena website itself says it is not appropriate for women who:
•Problems with your immune system
* I have cancer therefore I am immune suppressant/compromised.

***As per the US National Library of Medicine: http://www.ncbi.nlm.nih.gov/pubmed/21463255
Progesterone (P) participates in the regulation of several reproductive processes such as ovulation and sexual behavior, however, this hormone also participates in non-reproductive processes, such as neural excitability, learning and memory, and pathological processes such as cancer. P mainly elicits its effects by interaction with its intracellular receptor (PR), which is a ligand-activated transcription factor that modifies the expression of genes involved in the control of cell growth and proliferation, such as vascular endothelial growth factor and epidermal growth factor receptor.
Two PR isoforms have been reported: PR-B and PR-A, which present different function and regulation. PR isoforms are expressed in U373 and D54 cell lines, which are derived from grades III and IV of human astrocytomas respectively. In both cells lines P increases the number of astrocytomas cells.
Articles:
---------
- Progesterone induces the growth and infiltration of human astrocytoma cells implanted in the cerebral cortex of the Rat. "Progesterone (P4) promotes cell proliferation in several types of cancer, including brain tumors such as astrocytomas, the most common and aggressive primary intracerebral neoplasm in humans."
Progesterone (P4) is a steroid hormone derived from cholesterol that regulates several functions such as sexual behavior, pregnancy, and neuroprotection, and it has also been related to cancer progression.
Reference: http://www.hindawi.com/journals/bmri/2014/393174/

The short of it is I consulted a nurse friend of mine about my obvious suspicions on my bolded parts above regarding the cell proliferation, etc and she said I was absolutely correct. Since my brain tumour is a mixture of an astrocytoma and an oligodendroglioma why would I want to take a drug that is being continuously released in my system (even if slowly and in smaller doses) that contributes to the proliferation of the very cells that I currently have that are malignant in my brain? I don't think so. I can't stop what naturally occurs in my body but I can block what Drs want to feed into it. I will of course talk to my Oncology nurse tomorrow about it, but I think from what I've read from reliable sources (such as the National Library of Medicine) that I've made up my mind to not follow through with her treatment option before even talking to my Nurse. Anyways. The good news is that the biopsy shows no cancer, the "fun news" is that now I get to play hard ball with several doctors on proper treatment options because I have to consider the impact on my cancer treatment.

[Lynn49]

Tara, if your life was a movie, no one would believe it! It would be listed at "fiction"!
Honey, just what you need....another rut along your road of life...so sorry to learn about how this condition has been affecting you these past couple of months, and oh, absolutely you must be exhausted!! Thank God no cancer showed up, that's absolutely wonderful news, and you do have a good team around you although you're pretty darn good about looking after yourself and you won't do anything unless you understand the whole story. Good for you!

I pray for the day when your health issues are finally over, and Tara, I do believe they will all come to a positive conclusion and that you'll be able to enjoy your summer without another care in the world! I hope and pray for that day to come, soon!!

Take care, Sweetheart...I hope you're just lollygagging around in your jammies all day with your hubby and enjoying the things you like to do together. Is it too cold out for a walk?

Big hugs to you, my Friend....!!!

[walkonby]

Tara, just read the latest about what you are facing. I love that you research every possible thing they try to put you on.
Hoping you find some solid answers very soon.

[TaraF]

Oh Lynn lol Sometimes I don't believe my own life. haha I wish it were fiction. Meh. You deal with the cards you're dealt and hopefully you deal with it well. Though I think I missed my calling of Doctor!

Walks I spent almost $7 printing off the side effects of this one medication I'm on because they up'd the dose when I was in treatment from like a total of 50mg a day and I'm now on 150mg a day for my seizures. Well doncha know one of the serious side effects of it is excessive bleeding. Huhwah? I'll play detective and I'll play Doctor and submit all of my findings to everyone before anyone shoves more medication in me or wants to put me under any knife. lol I see my gyno on the 6th so I'll see how my bloodwork is and talk to her about everything I've compiled. I haven't "felt her out" yet, so I don't know if she's the kind of Dr that appreciates or doesn't appreciate a patient coming into her office with information. Some Drs are jerks like that. Guess I'll see.

Some answers would be awesome though because I'd LOVE to enjoy some of this weather. Now that it's double digits on a regular basis (even if it's only 15) I want to be out and enjoying it!

[TaraF]

I'm pretty much at my wits end. I've been suffering with pretty bad hives for 4 days now and they seem to appear when I go out in the sun. So I went to the clinic today to see a Dr and hopefully get some relief as the Benedryl and cold compresses aren't cutting it. I deal with the same walk-in clinic by me and all of the Drs know me, have a nice thick file on me lol so it's nice to go there and not have to go through a total clinical history with them, but get this:

I was told that I could be having a delayed reaction to the chemo/radiation. Umm huh? I wanted to clarify with him that since my tumour wasn't compatible to the chemo that I was only on it for 1 week and did the radiation for 5 weeks. That doesn't matter I'm told, but the fact I wasn't compatible really does. Umm ok? Since I was wearing jackets at the time of year that my treatment ended up until now my arms haven't really been exposed to sunlight but my face and hands have been, so I may simply be having a delayed reaction to photosensitivity. Or sun allergy.

My reaction? You have GOT to be kidding me? I wanted to smack him. I was like "how can someone be allergic to the sun? And why me?" lol So for the next 4 days I have to go walking in the sun with long sleeves in order to rule out environmental factors. *sighs* If the hives go away in the next 4 days then I am indeed "allergic" to the sun, if they are still there then I have allergies to something environmental.

Sorry for the crappy photo but it's hard to take a photo of your own arm. haha My hives are a very bright red but this is how both of my arms are, they won't go away despite me taking the max allotted dosage of benedryl daily.


But really THIS is how I'm feeling.

[Lynn49]

OMG!! What the H&LL??!!! What next?!!!

Okay. So. You'll be able to determine sun sensitivity, but why on earth didn't they give you a shot of something?! I can't think of the name of it, but when I reacted that way to something, I had to go to the hospital and I got an injection that settled everything down...what a relief! Is there some reason that you can't receive one? Are they waiting on your determining the cause?

Lordy, Girl......when we start "tinkering" with our bodies, there just doesn't seem to be an end to it!

[TaraF]

I have no clue. He gave me a prescription for a cream that I'm not suppose to fill lol because if I use the cream on my arm and cover up we won't know which one is working. Makes sense but why give me a scrip? I called my neurologists office this morning to ask about my one seizure med because it's the only change in my life since all of this crap has started I can think of. I was on it previous but the dose increased. The secretary said she'll pass my message along but doesn't think it's a reaction to that because I would have had it sooner as I've been on it about 1.5 years now. I argued the point that couldn't a person develop allergies and/or sensitives to a drug at any point just as they do to food they eat all the time? Because apparently topiramate can cause excessive or missed menstrual cycles and hives. Ummm "hello Dr!!!"