Good Thursday Morning!
Having that first cup of coffee this morning! Laura & I have got a long day ahead of us. Today is the appointment with the surgeon about the my cancer. Let’s see how that goes? Maybe we can get it scheduled & know a date on when the surgery will be done? We have a 2 hour drive one way to Birmingham, Alabama to the doctors office.
Wishing Everyone A Good, Safe, & Blessed Day!
I hope you will get things scheduled, the sooner the better, so you can conquer this and put it behind you!
Safe travels to Birmingham and back!
Sending prayers 🙏🏻
Lorelei
Hi Lorelei;
The doctors visit was not what I was hoping for, did not get a date scheduled, got to get clearance from other doctors for other medical issues first. However an awesome ending (see the post I just made)!
There are good people still in this world!😊♥️
Tiras,
There are so many good people in this world!
Your testimony is inspiring to so many of us, Tiras!
I’m sorry you didn’t get as much accomplished today as you had hoped. All the clearances and consults with your doctors are so that you will get the best possible care! It is worth the wait.
I’m glad you got to meet two new friends today!
Lorelei
That’s a long drive. I hope you get the date set and it’s soon. Let us know how it goes.
Praying for you both.
🤗💗😘🙏👼🕊
Hope it went well. So good to have you back x
Hi Happytulip;
Thank you!
It did not go as I was hoping for at the doctor, still got some things to get from some of my other doctors first.
On a brighter note the event that happen after was awesome (see the post I made today)!
Wishing You The Best!😊♥️
So sorry your going thru this Tiras as if lupus isn't enough to cope with. Do hope your appt went as well as it could today. TAKE CAREX
Aww best of luck Tiras, positive vibes and love going your way! You’ll be in my prayers 🙌🏻 Let us know how you get on lovely 💖🌟
Hey Tiras - Sorry to read your post... and the distance between you and your clinicians! Ive just been through some surgery for this myself - but I get the feeling yours is a little more complex. Mine was breast/lymph nodes. If theres any info I can help you with or might be able to help you with, just let me know.. I take it they are discussing radiotherapy, and chemo, if the surgery is given the green light and goes ok? Or is that all a little too soon to think about? So sorry you are going through all this... Here is you have any questions as Ive done a little research on the raidotherapy/lupus side of things.. All the very best to you Tiras x
Hi DJK99;
Thank You!
Yes, Laura and I have look at the radiation treatment, however, with my skin issues from Lupus, honestly, I am afraid to try it! I was told Thursday by the surgeon, that if I have radiation and if it doesn’t get the cancer, then surgery is not an option after radiation? They tell me that there is 95% chance that they can get all of the cancer with surgery. As of now the cancer is contained in the prostate gland, and has not spread? So to me it seems that surgery is the only way to go?
I’m like you, Laura and I have done extensive research, and everything points to the surgery?
Thank You again!
I wish for you the very BEST!😊♥️
Hey Tiras - yes I think surgery (if possible) is generally the first step - but not always - my neighbour had some weird medication and chemo first, then surgery, then radiotherapy. I think surgery is felt to get most of it out, and then radiotherapy, if given, is to get anything left in the area.. Chemo is for the rest of the body, in case any little undetected cells have gone off somewhere, as they cant see them under the microscope. I dont think chemo is a great option for mod to severe lupees to say the least - but your onco team and rheumy will definitely have a view. Be great to hear the outcome if you feel able to post it on here. Ive my first onco meeting in a week or so time - and am petrified myself at the though of radiotherapy but they are strongly recommending it, and said would have really pushed for mastectomy if thought I wasnt up for it post lumpectomy. And nasty hormones for 5yrs too... and potentially chemo but am sure Rheumy will say er, no. Think it would do far more damage than I could handle.. It all happens so quickly eh? From diagnosis to ok lets get on with it! But it has to, of course, for the best outcome. My skin is v v dry, always has been, use Eucerin 10% Urea body lotion allover every day which is so fantastic... and as a child/teenager covered in rashes and broken skin etc. But with a continued pure diet (seeds, veg, fruit, clean protein and tons of water and vits - no sugar, white flour or rice, chemicals etc) it got better slowly and it is only on my feet and hands when having a flare/ off my methotrexate that I have these lesions now. I remember now seeing your foot pics recently on here... ouch. What meds are you on usually for your lupus? I am usually on Methotrexate etc, and the lupus got much worse after a month or so off it as I had to due to the the metho keeping my white blood cells down which is no good for recovering from surgery ie much higher risk of infection. Im still off it due to impending radiotherapy, and still healing from surgery - so had a steriod depo injection of Prednislone a month ago which really got rid of the lesions/swollen joints all over my hands - but nasty side effect was dreadful insomnia for two weeks... I cant go through that again. and cant imagine it would be great for anyone trying to heal. What are you on and have they discussed what changes youll have to make pre/post op meds-wise? d
Yes, the effects of healing has been discussed. I take 2 to 3 times longer to heal than normal! Radiation may be an after surgery procedure only if absolutely necessary!
I take methotrexate, prednisone, hydroxychloroquine, and folic acid for Lupus. I take several other medication for blood pressure, COPD, etc.
Here is a list of all medication I take. There are some creams on here for skin issues also.
MEDICATIONS
----------------------------------------
01. Alclometasone Dipro (Topical)
02. Alendronate (Oral Pill)
03. AmlodipineBesylate (Oral Pill) 50 MG
04. Azithromycin (Oral Pill) 250 MG
05. Chlorthalidone (Oral Pill) 25 MG
06.
Chlorthalidone (Oral Pill)
07) Clonidine (Transdermal) 0.2 MG
08) Folic Acid (Oral Pill) 1 MG
09) Gabapentin (Oral Pill) 100 MG
10. Halobetasol PROP (Topical
11. Hydroxychloroquine (Oral Pill) 200 MG
12. Losartan (Oral Pill) 100
13. Methotrexate (Oral Pill) 5 at 2.5 MG weekly
14. Nexium DR (Oral Pill) 40 MG
15. Prednisone (Oral Pill) 5 MG
16. Proair HFA (Inhalant)
17. Tramadol (Oral Pill) 50 MG as needed
18. Trelegy Ellipta 100-62.5-25
Wishing you the best!😊♥️
Thanks Tiras. I was wondering if they want to take u off the methotrexate as i have twice now.. lupus came back with vengeance. But had to as my neutrophils always low and not good for healing... x
do you know your white blood cell count or neutrophil count? If yours isnt low then there may not be a need to come off it. Thats probably what it is. Do you have your bloods taken every month to keep an eye on your liver function due to taking methotrexate? Probalby best to ask your consultants or nurses about your WBC levels.. I only say this as it is a problem for me and have to come off Metho 2 weeks prior to surgery and not go back on it until my surgery is healed... due to fact my bod is at further risk of infection after surgery with low WBC and metho just brings it down further.. Neutrophil need to be 2+ - mine are generally hovvering around anything for 1.0 - 1.8. but recently off metho happily 2.4..
I do not know what my blood counts are? Yes, they check my blood every 2 months. Everything is normal as of now. When it changes, my doctors will call me and call in prescriptions if something is off?
Sounds good. Might just be worth discussing the Methotrexate and neutrophil situation with your rheumy.. as my nurse and Gp didn;t even note mine was going too low and needed to reduce my metho. And if youre having surgery you need your WBC (and that includes your neutrophil level specifically to be above 2) to be good... All the best x
Living with someone with Lupus
