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Aprils Cancer Update

aprillorey's picture
aprillorey
Posts: 104
Joined: Apr 2010

Hello

all 1st let me say just how sorry i am that i have not came on to the site for a while,i have been praying for each of you i am sure there is alot of new people who has joined so i will kind of expilan my cancer and then give you all a update on how i been as i have had some new isues come up.

for those who dont know or may have forgot, i found out by the way of a D&C i had the uertus cancer, a complet sock to me i was 29 years old, on April 16th 2010 i had the Major surgery to remove every thing the uertus tubes and ovrys, found out i was stage 1 ( good news ) but i was grade 2 and there is 3 grades so i was a active cancer

i was told my hormons caused the cancer, i was at high risk of its return, so radtion treatments would be needed in may 2010 i was told i was in remison of the cancer but still they wanted me to have radtion treatments i started i think in july on the treatments i had 3 rounds of treatments

i had my check up and was still in remison praise god.

i turn 30 in AUG

so here is a small update on me

at my last check up i was still in remison now i have a to go see the cancer doctor again on DEC 3rd so im praying i get good news yet again

i have had some medical issues since the radition and of course because of going in to the menopuse i still cant take hormons since thats what caused my cancer so the hot flashs has been alot for me to handle unsure if there is any nurtal things i can take to help or not he has not told me of any thing.

my body has felt tried and sick oh most every day i feel run down like i just dont have the will power to get up and do a lot so i have to do things a little here and there.

i have had a on going UTI thats last past a month so now they are sending me on to a doctor who can look more in to the blader the family doctor thinks its due to the radition in the are and due to all i been through as i had never had a history of ever having them before hand

how ever the radition doctor dont seem to think it is but she went on to say it would not help me to heal and may take alot longer and be harder to fight off .

i havent done the diltor due to it and she is telling me i need to do it even with the infaction because the skin tisue most likey has Closed up and my next pap and test on DEC 8th will be very much painful as they are going to have to re open the skin tisue

the diltor has been painful for me to use and due to the infaction as i said i havent used it so its been a long while since i used it i will start here tommrow again and not looking forward but hope it opens the tisue so that it will not be so painful when i go for check ups

all over i feel like i am ok i dont think much on anything i have been going about my life

but the moment i walk in to that cancer doctors office i am just reminded that i have had cancer that i am a Servoir of cancer ( if i can say that ? ) im in remison and still have 4 and 1/2 more years to go before they say i can say cancer free

it has turly affected my out look on life all through its never far from my mind either , i have had a few trips to the ER with dizy spills and tones of pains and we all know when we have pain down in the lower area it worries you if it has came back but thankfuly my pain was caused by on going UTI isues and nothing more i had a CT SCAN done of the chest as well due to chest pains and a EKG looked ok

but been having lots of chest pains and thats another scary isue since my dad his brothers his mom and dad all died young of heart attacks so ill get that checked soon just want some kind of brake from doctors

well thats my update ill be checking in alot more

god bless

hopeful girl 1
Posts: 454
Joined: May 2010

Good luck with your upcoming appointment-I am sure you will get good news and remain NED.

I guess all of these discomforts or worries after treatment, are what they refer to as the new normal.

I am glad that the scan and ekg looked ok for your chest.

I just finished me treatment which included surgery, radiation and chemo, and right now I am dealing with very low bloodcounts for everything, white are very low, I just had a hemoglobin transfusion which brought that count up, and my platelets are only 25,000 so I may wind up needing a transfusion or two there. I have had trouble with my platelets after chemo four and six.

Good luck and let us know how you are doing.

Cindy

aprillorey's picture
aprillorey
Posts: 104
Joined: Apr 2010

Thank you so much cindy for responding to my update

and also to share with me your update and story. what stage was you in ? i had low blood counts and had to do transfusions but that was before my surgery due to lots of bleeding i know its not fun at all .

yes it turly seems like any discomfort or pain is a worrie and that seems to be our new Normal many family think because my surgery is over and radition that i should be just fine and back to normal i told them i had to get use to the new normal but they didnt fully understand what i ment i pray they never have to.

i will be praying and thinking of u as well cindy god bless you

april

hopeful girl 1
Posts: 454
Joined: May 2010

Hi April,

I was stage 3C at time of surgery. I had complete hysterectomy, including ovaries, fallopian tubes etc, and some lymph node invasion. I had a lymph node that was growing into the vascular system that had to be repaired during surgery, and so I had three transfusions during surgery, and two more post surgery, and now the transfusion following my 6th chemo.

All of my numbers are low right now, white cell, neutrophils, and particular platelets.
They are closely monitoring and having me come for bloodtests almost daily because if platelets hit 10,000 I will need a platelet infusion. I am at 25,000 per the test yesterday on Saturday.

Yes, the new normal......that is what we have to live with now. To try not to worry about it returning, and try to enjoy each day and be hopeful that it does not return.

It is also encouraging to see that so many on the boards, are still doing well despite recurrences.

I wish you well, and keeping fingers crossed for continued NED for you.

Hugs,
Cindy

aprillorey's picture
aprillorey
Posts: 104
Joined: Apr 2010

Cindy thanks again for writing to me and leting me know about you. they took the lyme nodes from me as well they took alot i would have to re read my papers and stuff to see how many i kept thinking over 20 somthing unsure . are you in remison now ? i will pray over you big time u have been through alot more then i turly have with this cancer :( and your right we will always worry about the return of the cancer each pain in our body scars me im having alot of pains in my body right now that is not normal for me in my tyroid has been buging me and hurting me bad as soon as we get this infaction under control we will talk about that and see what they say .

saw a doctor today the blader doctor told me my on going uti wont go away with meds i been on 3 or 4 meds and it never helped he said theres not much we can do because the radition has caused that i was told to keep dranking alot of water :( and to lay off my ice tea.

thank you for thinking of me for NED i havent had CT SCANS i wont until im a year in to my remison

my doctor said i will need to do check ups every three months for 2 years i will do the PAP test and the Pevlic test at the same time to be sure it has not came back he also puts his finger in to feel the cluff to be sure he doesnt feel anything

each time i go im fraked out he will fine somthing thankfuly he has not all through i had a CAT scan at the hospital when i was in pain and thankfuly that showed i was OK they did a cat scan where the cancer was and on my chest to.

that was orderd by the er doctor through not cancer doctor.

so anyways its every 3 months for 2 years then i will go evert 6 months for 3 years i will have CT scan and chest xray once a year . through i will do this for a full of 5 years if it don't return i am told i will be cancer free 5 years seems forever

i cant wait until i get to that point all through im sure even if we get there we are all going to worrie about geting cancer in another place

anyways HUGS april

Michaelynn
Posts: 82
Joined: Apr 2010

Hi April

I was diagnosed on February 22 the day before my 7th wedding anniversary. Had the surgery on march 10th. Came back Stage 1 grade 3. Started Radiation (vaginal cuff) treatments in May. then did 6 rounds of chemo (carbo/taxil) and finished September 24th. I to am having vaginal problems and using the dilator. I try to use mine everyday because if I miss more than 1 day in a row I can feel the scar tissue forming again when I use the dilator. I also have a problem with 2 spots in the vagina where the canal narrows. One is right inside the opening which made sex almost impossible in as far as penetration. I am using the insert it and turn it clockwise and counter clockwise method and also stroking it in and out to simulate sex. I usually read a book while I am doing this as it makes the time go much quicker and takes my mind off of the chore. Also you might want to upgrade to a medium dilator once you have used the smaller one for a few months. I hate having to use it but it does help and I always use mine right before sex as that helps with penetration also dry lining which can make sex painful. I have not had a pelvic exam yet. My last one was in May right after the radiation treatments. Had my first CT scan earlier this month and it was clear. Go in February for a chest x ray and another CA125 blood test. So i am living life to the fullest until February and then hopefully for another 3 months after that trying not to worry about the future but live in the present and the moment. Hope this helps.

aprillorey's picture
aprillorey
Posts: 104
Joined: Apr 2010

i wanted to thank you for sharing openly with me it is a grate help big time and lots of good advice you have given, i used my dailtor for about 2 months then i went to the Medum sized one it was more painful but since i have that on going UTI infaction i did stop and i havent done anything for a long wile so i think i need to start back using the small one

im worried since i have an exam on dec 8th at the cancer doctor that the tisue is closed how can u feel the vagina cluff if its narrow ? sorry i wasnt sure

you was same stage as me sounds like but a higher grade i was grade 2. no chemo and my cancer doctor dont seem to do any blood work

its kinda wird i feel he should be doing more but maybe im wrong ????????????/

he will do pap and peblic every three months then every 6 months with chestxray once a year and ct scan once a year he said thats it i guse part of me says

HEY im in remison u need to be doing alot more what if it comes back but in another spot ? how the heack can u tell ? if your not doing over all check ups

i dont no maybe this is my worrie and thats all there spose to do

well thanks so much for the advice big time

i use KY jelly on the daltor im not sure if that is good they told me not to use the oils as it make me go dry

thanks again for advice

susafina
Posts: 134
Joined: May 2010

Hi April,

A lot of what you sid really hits home with me. I was diagnosed last Nov with stage 3C grade I uterine cancer. After surgery I had 28 treatments or radiation along with 2 doses of Cisplaiinum. then I had taxol and carbo. Bad enough we have to endure all of the treatment, but the afterwards seems to be worse. You think it is over and then life continues but you have to deal with everything else. The hot flashes are terrible too For vaginal dryness my docs have me using Replens 3 times a week. This is a non-hormone moisturizer. It is suppossed to keep tissue moist and pliable. This has really helped a lot. It was explained to me that we moisturize on the outside when we have dry skin so now we have to moisturize on the inside too.
I was skeptical but it really works. I also do use the dilators with lubricant. But the replens even makes using the dilator easier. I realize you have the tissue which might still cause pain but the replens may help. I had my 3 month pelvicc exam post treatment and to my surprise it was painless. I was shocked. Although the doc's saty most likely have to use the moisturizes for life that is OK if it will make some parts of life normal again.
I know your frustration too. I have bad peripheral neuropathy. To hear the docs GO AWAY IN A YEAR DOESN'T MAKE ME FEEL BETTER NOW. i am hoping that you continue to get good news and get stronger every day.
SUE

aprillorey's picture
aprillorey
Posts: 104
Joined: Apr 2010

wow thanks sue for your message and it is very helpful i never heard of replens my doctor tells me to just use the ky jelly for dryness is replens somthing i can just buy over counter or do they have to get it for you ? it sounds like i need to use crame then for my dryness

im glad it makes u feel beter it dont seem my doctor does alot as far the crames and after care i feel like im on my own it does get very frustration at alot of times yes the hot flashs are alot to deal with im not spose to use anything with hormons cause its what they say caused my cancer so i feel stuck if u no what i mean and been going it alone but it is the worse

thanks for your advice and message it helps to here from every one

happy thanksgiving ladys and sue my prayers are always with u to hun

april

hopeful girl 1
Posts: 454
Joined: May 2010

April,

Hi.

In one of your posting threads, did you say your thyroid is bothering you?
What do you mean?

Can chemo bother that? I just wondered, because earlier in the summer when I had a ct at emergency room because my lymph nodes in jaw were all swollen (turned out to be I needed a root canal), they found an "incidental" on the ct of thyroid nodules. I was told it could be nothing and that many people have them and they are fine.

Now that I am done with treatment, when my blood counts go back up (all my counts are still really low, especially platelets) they are going to send me for an ultrasound of thyroid to make sure nodules are nothing of concern.

Just wondered what your issue was.

Thank you,

Cindy

aprillorey's picture
aprillorey
Posts: 104
Joined: Apr 2010

Hi cindy

Im not even sure what it is but i have had pain and my husband said thats the place where your thyroid is locoted the pain comes and is painful but then it seems to leave and right now im not having it i was unsure if it is the thyroid or not husband thinks it is but i know when i had a iv the other day at the er they put it in the soulder area and my iv poped and i been in alot of pain in the areas so i seem to think it may be that but not sure

right now im trying to get this infaction under control before i see the doctor about more problams but it does have me worried sick right now

i had radition and not chemo so im unsure if chemo can cause problams with that or not i think right now my main problam is the infaction and geting that under control

how ever i have that pain i whole body seems to be full of pain since the radition so im gonna ask if there is anything i can do to get my pain under control

:(

Northwoodsgirl
Posts: 570
Joined: Oct 2009

Hi ladies,
One thing that I am taking is Effexor 37.5 mg. It is a very low dose of an antidepressant which has been shown in clinical studies to have a positive affect in decreasing the hot flashes. It really has worked for me. I have no side effects from the drug. There is another drug for neuropathy which is called neurotin which I have a script for but haven't started taking as I wanted to see what the Effexor would do. My neuorpathy has improved significantly and I am almost one year post chemo. So time may make a difference. There is also a nutritional supplement that a neurologist told me about a provided a clinical study to support. I posted in it before and right now can't think of the name of it. Acetyl L Choline I think. Any just wanted you to know that there are things you can try to help with hot flashes and the neuropathy. The side effects from our cancer therapies really are not good but we are thankful to be cancer free. Hang in there!
Lori

aprillorey's picture
aprillorey
Posts: 104
Joined: Apr 2010

lori

thanks for your advice my doctor gave me some effexor after my surgery how ever i have not taking it i guse taking pills scares me my mom got hooked on drepsion and pain pills so i didnt take the depreson pill im starting to re think that maybe just maybe i need to try it i still have them here i just needed alot of advice from those who have taking it you are seting my mind at ease some with if i sould take it or not,

your right the side affects are not good from our cancer but we are need to be thankful to be cancer free im in remison not yet cancer free but i proclam i am every day that it wont come back i have to remine faithful for sure

thanks to all u ladys for advice and helpful info i love you ladys alot and pray for each one

susafina
Posts: 134
Joined: May 2010

April,
Sorry it took so long to answer. The replens is over the counter. It is a moisturizer not just a lubricant. When used often about 3times a week the vaginal wall moves easier and stays a bit more moist zand pliable (for want of better word). It is completely safe and hormone free. My docs reccommended it. Stay welland strong.
SUE

aprillorey's picture
aprillorey
Posts: 104
Joined: Apr 2010

thank you so very much i will pick up some soon i researched it of course i research every thing LOL but i use it your advice has helped so much i will be buying some if i use it will i need to use the jelly to when doing the dailtor still ?

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