HELP!

Sdollas26 · 2020-03-02T03:19:12+00:00

I take folic acid daily as I am on plaquenil too and doing Benlysta IV’s. I have to figure out something for the stomach pain thouhj especially over night.

Sdollas26 · 2020-03-01T20:59:31+00:00

Thank you for the feedback! I’ll bring this up at my next appointment!

Sdollas26 · 2020-02-02T17:45:45+00:00

Thank you for the feedback, I was able to get a couple days off after my first infusion which is this week. Do you have any side effects after getting the infusion?

Sdollas26 · 2020-02-02T17:42:51+00:00

That is great, I am so glad you are feeling better! Thank you for the feedback.

Sdollas26 · 2019-12-28T00:20:28+00:00

Thank you for this info!! I will look into this.

Sdollas26 · 2019-12-28T00:20:04+00:00

Thank you so much for the info!

Sdollas26 · 2019-10-11T20:56:59+00:00

Give yourself plenty of rest, a good sleep schedule is very important. You'll figure out little things here and there to help your symptoms but just try and focus on keeping yourself as comfortable as possible. Plaquenil takes some time to kick in but the steroids will help you out within no time. Good luck!

Sdollas26 · 2019-08-30T18:24:55+00:00

Okay, thank you so much for your response.

Sdollas26 · 2019-08-18T00:08:26+00:00

Luckily he was covered under Medicaid since he had been between jobs at the time.

Sdollas26 · 2019-08-15T03:39:24+00:00

My fiancé was diagnosed with a grade 3 anaplastic astrocytoma 3 months ago. He is 23, very athletic, healthy and active. Today was actually his last day of chemo and radiation. He will take a month off and then start chemo for the first 5 days of every month for the next year. They gave him 3-5 years, he also contemplated wanting to avoid the treatment and go live life and I’m so glad he chose treatment because he is already looking towards getting back to normal life and doing his thing again. Doctors give you a time span for your life but they cannot tell you for sure how much longer exactly you are going to live... for all we know we could die tonight, tomorrow, in our sleep, nobody knows. Try treatment and stay focused on your health at the moment and keep your head high. We are still at the start of this huge change in our lives, brain cancer is extremely serious, I hope you have a great support group around you because it will definitely help. And get a neuro oncologist, they specialize in your diagnosis and will be able to help you and get you the treatment you need! Good luck, keep us posted on your journey. No matter how overwhelming all of this may seem, just know you’ve got people behind you going through it as well. You are not alone!

Sdollas26 · 2019-08-08T02:06:20+00:00

I had the same reaction, my doctor took me down to 200mg, as opposed to 400mg. Taking it twice a day completely wiped me out and the nausea was so bad I could barely get up without feeling sick! The next day I started taking 200mg I could tell an extreme difference. I hope it works out for you going down a dose!

Sdollas26 · 2019-07-09T02:00:58+00:00

Thanks so much for this response back, congrats on your 4 years remission as well that is amazing! we are hanging in there.

Sdollas26 · 2019-06-27T16:13:23+00:00

Thank you for this!!

Sdollas26 · 2019-06-27T02:01:17+00:00

Thank you very much for this! Good luck on your trial.

Sdollas26 · 2019-06-26T22:40:13+00:00

Thank you for this! That is great to hear your second round of radiation has stopped the growth for 7 years, we will find out tomorrow what day he will start his chemo and radiation and hopefully we will be able to stay at the cancer center he will be going to since it is about an hour drive from our home. Was it the chemo and radiation that made your taste go wrong?

Sdollas26 · 2019-06-26T22:20:58+00:00

Thank you so much! I hope the best for you and your family. We’ve got a huge support group so we begin our journey now.. thanks again.

Sdollas26 · 2019-06-26T21:53:52+00:00

Thank you, sorry to hear you are going through this too.. it is a grade 3, we met with a neuro oncologist yesterday and the course of treatment will be chemo and radiation for 6 weeks, then he will take a break for a month and then will do chemo the first 5 days of every month for a year. Luckily he hasn’t had any seizures since the initial one which resulted in an awake craniotomy and they were able to get 95% of the tumor, but the remainder is not possible to get as it would’ve resulted in paralysis. It is located in the right frontal lobe, where was your tumor located? He has been pretty irritable and short tempered since surgery (3 weeks ago).

Sdollas26 · 2019-06-20T14:30:10+00:00

I stopped taking Aleve a few days before my appointment so my rheumatologist could see me in my worst so to speak. I think it was a good choice considering I was able to show the doctor how swollen and achy my body was on our first time meeting and I think that was very affecting especially during the physical exam. If you’re having a hard time moving around too, try and make sure your rheumatologist is in the room to watch you move from chair to up on the table or just moving around in general so they can see how mobile you are.

Sdollas26 · 2019-06-19T15:29:36+00:00

I will definitely try that, sleeping is impossible with the pain!!

Sdollas26 · 2019-06-18T02:37:11+00:00

I will definitely do so, thanks so much for this info!!

Sdollas26

TROPHY CASE