feeling good at day 220

Hi to all,
well its been a long time since i posted and i just wanted to give you all an update–its now day 220 if i calculated right and i am doing great–as far as i know i am still in remission. i am just on aredia treatments every 2 months i go back for a complete check up in Oct. But i am basically back to normal. i still do not work as i wasn’t before but i am pretty much able to do everything for myself as far as daily functions and such. It seems unreal that i am posting and still in remission. i had my SCT DEc 29th and i am doing good. My hair is still short but none the less its hair. It is all salt and pepper and i am thinking about coloring it as i always did before but am kinda reluctant. Has anyone ever colored their hair after new regrowth after chemo. My hair. started growing back in feb so i quess it has been6 months. it is pretty baby fine. so i am wondering if it would be good or okay. Well to all who are thinking about having a SCT just do it it is so worth it. i will admit its tough but you do get better and remmission is the altimate result hopefully for all. to all my myeloma friends hang in there —there is hope.
Sincerely, Susan

DAY 105 AND VERY GOOD NEWS!!!

Hi Everyone,
WEll its day 105 and i have very good news to report –I AM IN REMISSION__YEA,YEA,YEA!!!!!!!. i had a bone marrow biopsy on Monday and a skeletal survey and lots of blood work done and i got the results today. All are normal. The bone marrow biopsy shows 1% myeloma cells and the blood work is all in normal range and my skeletal survey was good but i have to have infusions of Aredia every two months to keep my bones Strong. So basically my doctor says i am in remission. He tried to contact my SCT doctor but he was unavailable–to discuss how to keep me in remission–what maintenance drugs to use so i will probably get a call on that tomorrow. Anyhow i will leave for LAs Vegas on April 22 to celebrate!!!! Thanks to all who wished me luck and got me thur this. i will continue to update you from time to time. feeling good —Susan

DAY 91

jUST A SHORT UPDATE. iT’S DAY NINETY ONE AND I AM FEELING PRETTY GOOD. I WENT TO MY ONCOLOGIST YESTERDAY FOR WHAT I THOUGHT WOULD BE A THIRD INJECTION FOR MY ANEMIA BUT I WAS TOLD BY THE NURSE I DID NOT NEED IT SO I AM VASTLY IMPROVING. i WILL GO ON APRIL 9TH TO GET ANOTHER BONE MARROW BIOPSY AND THEN GO TO SEE MY REGULAR ONCOLOGIST APRIL 12TH TO GET THE RESULTS. HOPEFULLY I WILL OF GOTTEN A COMPLETE REMISSION. WISH ME LUCK. ONE MORE NOTE MY HAIR CONTINUES TO GROW NOT FAST ENOUGH FOR MY LIKEING BUT ITS HAIR NONE THE LESS. WELL UPDATE YOU AFTER ALL TEST RESULTS ARE IN.
SUSAN

SUSAN’S JOURNEY WITH MYELOMA 2007-03-13 15:58:00

HI EVERYONE,

I WENT TO MY REGULAR ONCOLOGIST TODAY AND GOT A SHOT OF ARANESP–ITS WORKS THE SAME AS PROCRIT. i HAD SOME BAD BONE PAIN WITH THE PROCIRT SO THEY GAVE ARANESP THIS TIME. THE PROCRIT HAS DONE ITS JOB BECAUSE MY ANEMIA IS NOT AS BAD. SO MAYBE WHEN I GO IN 2 MORE WEEKS I WILL NOT HAVE TO HAVE ANOTHER SHOT FOR ANEMIA. HAS ANYONE OUT THERE EVER HAD ARANESP FOR ANEMIA? ANYHOW I WAS FEELING PRETTY GOOD BUT AFTER SHOT I FEEL A BIT DIZZY. BUT OVER ALL I AM STILL FEELING FAIRLY DECENT. I AM STILL GROWING HAIR MOSTLY SALT AND PEPPER WHICH IS BETTER THEN NO HAIR AT ALL (HEY I’LL TAKE IT).

THATS ALL FOR NOW–SUSAN

SUSAN’S JOURNEY WITH MYELOMA 2007-03-13 14:58:00

HI EVERYONE,

I WENT TO MY REGULAR ONCOLOGIST TODAY AND GOT A SHOT OF ARANESP–ITS WORKS THE SAME AS PROCRIT. i HAD SOME BAD BONE PAIN WITH THE PROCIRT SO THEY GAVE ARANESP THIS TIME. THE PROCRIT HAS DONE ITS JOB BECAUSE MY ANEMIA IS NOT AS BAD. SO MAYBE WHEN I GO IN 2 MORE WEEKS I WILL NOT HAVE TO HAVE ANOTHER SHOT FOR ANEMIA. HAS ANYONE OUT THERE EVER HAD ARANESP FOR ANEMIA? ANYHOW I WAS FEELING PRETTY GOOD BUT AFTER SHOT I FEEL A BIT DIZZY. BUT OVER ALL I AM STILL FEELING FAIRLY DECENT. I AM STILL GROWING HAIR MOSTLY SALT AND PEPPER WHICH IS BETTER THEN NO HAIR AT ALL (HEY I’LL TAKE IT).

THATS ALL FOR NOW–SUSAN

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DAY 68

Hi Everyone,
It’s hard to believe it’s day 68–but here is. I am doing fairly okay. I did get my first injection of procrit about a week and a half ago–however i experienced some bone pain with it. Some of the nurses say it is normal and some of them say it is not so here i am again wondering which is true-however i indeed did get bone pain in my hips and lower part of my legs below the knee and my feet. I am just taking ibuprofen for the pain. But i have 2 more injections to go. Has anyone out there experienced bone pain with procrit? I have been feeling a bit unsteady on my feet and kinda like i have some sort of infection in my inner ear i think. But on the other hand i am growing some hair–not enough to feel comfortable without a hat yet but i am hoping that will be soon. My hair has come back sorta a salt & pepper look. WEll i see how long i can stand that. I am 48 but i don’t want to look 60 but maybe i will like it after all.
Well thats all to report for now. Will keep you posted. Susan

DAY 56

Hi Everyone,

I waited to post untill i saw my oncologist today. ALl seems good my blood counts are all good but he say i am a little anemic. SO Monday i will start on procrit injections every 2 weeks for six weeks and then i will have my bone marrow biopsy to see if i got a remission. If i did he says i will go on maintenance which will be revlimid. I will probably be on revlimid even if i didn’t get a complete remisson. But all and all i am fairly well i can do most everything and the heartburn has seem to of gone away for now. Believe it or not My mother had promised me a trip to Las Vegas that was her way to give me a reason to get better. Well it worked because today i asked my doctor if he thought i would be able to go and his exact words were (i want you to go) We plan to go in April but that just goes to show that i feel better enough to think i will be in full force then and not doing bad now. My Hair has begin to some what grow back it is kinda like peach fuss now but i am hoping by April i will have my scalp covered.
Crissy tell your husband not to worry he will be okay and just tell him when he thinks it will never get better IT DOES GET BETTER . It is a little rough at first but you get better every day. I am living proof of that.
And i am hopeing he will get a complete remission from his also. IF you or he have any questions during his transplant i am here.
Susan

DAY 46

HI EVERYONE,
WELL HERE I AM AT DAY 46 –THINGS ARE GETTING BETTER AND BETTER –I CAN DRIVE AND DO ALOT THINGS LIKE I DID BEFORE BUT I DON’T THINK MY BODY HAS FULLY RECOVERED. THE DOCTOR SAYS IN 3 MONTHS I SHOULD HAVE 75 OR 80% PERCENT OF MY STRENGTH BACK. THAT IS MUST OF MY PROBLEM NOW EXCEPT FOR STILL SOME LINGERING EFFECTS OF MY ESOPHAGUS–I SEEM TO STILL GET ALOT OF HEARTBURN AND KINDA OF A TIGHTNESS THAT HURTS MY BACK AND SUCH BUT I GUESS THAT IS STILL SOME EFFECTS OF THE CHEMO. I HAVE TO BE CAREFUL NOT TO EAT TO MUCH OR NOT TO EAT SPICY FOODS AND CAFFEINE. I CAN HAVE SOME CAFFEINE BUT NOT A LOT. BUT I DO NOT NEED NAUSEA PILLS ANYMORE. ITS KINDA HARD TO EXERCISE BECAUSE IT IS STILL COOL OR COLD OUTSIDE SO I DO WHAT I CAN INSIDE THE HOUSE BUT THAT IS KINDA LIMITED SO
OVER ALL I AM SLOWLY BUT SURELY GETTING BETTER. AND MY HUSBAND DID BUY ME THAT WATCH FROM NEIMAN MARCUS SO I AM HAPPILY SPORTING MY NEW WATCH AS I WALK AROUND MY HOUSE. IT’S A GETTING BETTER AND VALENTINE’S GIFT IN ONE. I SURE DO LOVE IT. WELL THATS IT FOR NOW. WILL KEEP YOU POSTED INA FEW DAYS. SUSAN

Day 40

Hi everyone,
Well i am doing alot better. I still do not have all of my strength back but i can do alot more very slowly–of course i do take a nap and sit down if i feel tierd but over all i continue to get better. Each day is a new challenge. Henk i hope you are doing okay what did your oncologist have to say? I find that my head is extremely sensitive to the cold air or just in general i can’t wait to get my hair back. But my appetite has fully come back and Don i quess that man you talked to is right your appetite is back before the energy level but i have not gained to much weight. i try to do alittle something every day even if it’s just a little house work. i don’t feel back to normal but this is much better then before i can eat and enjoy my food and not throw it up and i am adjusting to the smells its getting better not every thing makes me sick now. i can tolerate the smell of my dog and such when i couldn’t before every thing made me sick. So for now i just rest and i go to see my regular oncologist on Feb 23 to see how my blood counts are and such. will keep you posted.
Susan

DAY 35

HI EVERYONE,
WELL I CONTINUE TO GET STRONGER EVERY DAY. I AM NOT HAVING TO TAKE MY NAUSEA PILLS IN THE MORNING AND I AM GETTING BY –HOWEVER I DO STILL GET SOME STOMACH DISCOMFORT AND I HAVE HEARTBURN WITH JUST ABOUT EVERYTHING I EAT AND THE BURPS BUT OTHER THEN THAT I AM DOING FAIRLY WELL. I DROVE FOR THE FIRST TIME YESTERDAY JUST A SHORT TIME TO MY SISTERS HOUSE AND BACK. I AM STILL JUST ABOUT I’D SAY 55% ENERGY WISE BUT HOPEFULLY WITH TIME THAT WILL GET BETTER ALSO.THANK YOU ALL FOR YOUR COMMENTS AND WELL WISHES I WILL CONTINUE TO POST. SUSAN