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feeling extremely anxious

Diropa
Posts: 6
Joined: Jun 2017

Hi. I have been diagnosed with stage III grade 3 endometrial cancer. Luckily it did not get into the lymph nodes. there was another tiny tumor outside on the lining from one of the fallopian tubes that was bent down. It was removed entirely. I need to have radiation and chemo. I go this Friday to set it all up. It is all I can think about. Not only does this disease wreak havoc on your body it invades your thoughts. I have already lost a whole month to this disease before I have even started to fight it!

CheeseQueen57's picture
CheeseQueen57
Posts: 770
Joined: Feb 2016

Hi Diropa:

Sorry to hear your news. We've all been there. Try to think of your fight as a marathon not a sprint and it's going to take a good part of a year for you to finish your frontline therapy. I was where you are about a year ago. Sometimes your biggest battle is in your mind. I found guided imagery very helpful. And I was fortunate to be surrounded by friends and family. Don't be afraid to let them help you. I also sought help from a counselor. And of course, you'll find the women in this group will become your soul sisters. Please let us share in your journey. 

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1479
Joined: Jun 2015

Diropa, Welcome and sorry you had to be here. You will feel a lot better mentally once you have your plan in place and get started. It is the waiting and the unknown that wears a person out.  If you feel anxious, you may want to consider using Lorazapam or another mild anti-anxiety med.  It really helped me. And, i didn't need to use them for very long. I am just over a year and a half out from my front line treatment. And, Cheese is right - it takes a year to get through everything and start building back to reach your new normal. Be kind to yourself and don't forget to ask for help along the way!

Come back and let us know how you are doing. We will be here waiting to walk the journey with you.

Love and Hugs,

Cindi

mwells1004's picture
mwells1004
Posts: 13
Joined: Jul 2017

Sorry to hear about your diagnosis ( I am stage 4 grade 3 MMMT, 4 rounds into a 6 round chemo). This is a weird thing we are all going through but I can tell you it gets easier. The first 6 weeks or so after my diagnosis I would wake up every night in an absolute panic, 4 months later and there are even tmes that I briefly forget that I have cancer. My advice is to find someone to talk to, whether it is a professional or friend or whoever, that will let you say whatever you need to say, someone who will let you say all the things that you are afraid of. 

You aren't alone in this.

Melissa

Angelapo
Posts: 24
Joined: Oct 2016

Hi there, 

my mom was diagnosed stage 3 c2 high grade in October. It does take over your thoughts but just take it a step at a time! She was NED as of her exam post treatment in June. The hardest part is just accepting the journey and knowing you need to take it a week or month at a time. Keep positive thoughts and keep asking questions. Knowledge is power! You have so much support here. 

 

Angela 

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2522
Joined: Mar 2013

Dear Diropa, I would agree with everything the ladies have said so far - once you get the plan from the doctors - work the plan.  It is a "one step at a time" process.  It will be part of your life, planning the treatments, but each one gets you closer to the end of the plan.  All the ladies here totally get it, and when we say it is "doable" it is because we have done it and will help you with whatever you need.  Please ask any questions and let us know how you are doing.

Nellasing
Posts: 529
Joined: Oct 2016

you are just packing your car Wink on Friday you will begin to drive and all that mental prep stuff will fall into the rear view- you will probably feel more in control with the forward action.  That's how it was for me.  I'm Stage 3A Grade 3 Endometrial Adenocarcinoma.  I finished 6 rounds of carbo/taxol last Sept. 21, 2016.  So far so good. 

You are strong and resilient and the advice above is awesome.  Keep reading here- there is tons of really good information.  We'll all be heading out with you on Friday and look forward to you coming back and letting us know how you are going along.   (((HUGS)))

Diropa
Posts: 6
Joined: Jun 2017

All of your advice is so comforting to hear. My husband, children(3 girls), and extensive family are all being excellent and supportive. I agree I think I will feel better once my treatment begins and I am actively doing something to stop this terrible disease. I have been going crazy researching diet and natural remedies that may help. I feel I need to be doing something for myself. I will be back to let you know how things go.Smile

MAbound
Posts: 794
Joined: Jun 2016

Diropa, 

I too am a Stage 3, grade 3 EC. I had one node positive on each side, though and one positive ovary and fallopian tube on opposite sides from each other. There are some things I wish I had known before chemo had started for me or that I had been better prepared for.

Your body has been through a lot recently between the unknown growing cancer, surgery, anxiety, and probably even sudden weight loss. If you haven't been taking vitamin B12, I would. Neuropathy is a really common occurance during chemo and it might be temporary, but it can persist long after treatment or even be permanent, too. Odds are that your B12 level is lower than lab levels would show because cancer, surgery, and treatment convert a lot of the active B12 in your body to it's inactive form that's not picked up by the lab test and that can put you at higher risk for neuropathy or impact it's severity. Be careful about taking a B complex supplement or extra of the other B vitamins because excess doses of these can be toxic and actually cause neuropathy by themselves, especially B6 and Folate. B12 is pretty safe to take even if the lab levels say you are in the normal or high range. Your body gets rid of what it can't use. I took both 3000mg sublingually (and continue to) and had monthly B12 shots just during chemo. It made a difference in reducing the severity of the neuropathy that occurred after my first round of Carboplatin and Taxol, but it isn't fast relief, so prevention is the better route to go.

If there is any chance that you are pre-diabetic or diabetic, get that taken care of before chemo starts. The steroid they give you to help with the side effects of chemo will temporarily raise your blood sugar a lot and elevated blood sugars, even if they aren't high enough to qualify you as diabetic can also increase your risk for or the severity of neuropathy. The American Diabetes Association recommends that pre-diabetes be treated with Metformin to prevent progression to diabetes, but I can attest to the fact that not all doctors follow that recommendation, so you may need to be prepared to push your primary if you blood sugars ever fall between 112 and 120. If your blood sugars are always below, 100, you should be ok, but you want to know before you start chemo. If you read TakingControls posts, she is our resident expert on taking Metformin, especially for this version of EC. 

If you can find and afford them, get some hypothermia slippers, mittens, and/or caps. They are Uber expensive because you need multiple pairs to have enough to last through infusions, so if you can only afford one kind, give priority to the slippers. The premise is that blood flow to the extremities is slowed to cold fingertips and feet during infusions to prevent neuropathy. I used the mittens and slippers starting with the 2nd treatment. The pain from the 1st treatment was so intense and unrelenting for me after the 1st treatment that I was willing to pay anything for relief and it cost about $800 for 4 pairs of each. The ice caps are only good for trying to not lose your hair and my doctor said he hasn't seen that they're that successful for doing that. It was too late for me to use after the first treatment anyway. The slippers also helped a lot for pain relief between treatments, so they were worth the price to me. It was the only way I could sleep and I preferred them to the powerful drugs with nasty potential side effects that they offer to treat neuropathy pain. 

Heartburn/nausea can be a problem when the chemo side effects kick in and I found that sometimes sleeping on a wedge pillow helped or taking Pepcid AC (chemo nurses recommendation), so maybe you'll want have those on hand. And watermelon!! Something about it really helps with any burning sensation in your esophagus and it tastes better than it usually does when you can't eat a lot of other things. Mucocitis is a concern during chemo too, (mouth sores) and I was told to swish after meals with a baking soda solution (1 tsp/cup) to prevent them and to avoid acidic foods like tomatoes and black pepper. 

You'll be having a lot of lab work, so be sure to add it to all of the other copies of tests you've been collecting. You'll be finding yourself going to a lot of different doctors as time progresses and having copies of EVERYTHING is really, really helpful.

Hold off on taking supplements like antioxidants until you finish chemo. Chemo is designed to attack cancer cells when they are in their most active phase (hence the spacing of infusions) and there's quite a few supplements, like antioxidants, that can reduce the effectiveness of chemo drugs by doing what they do to prevent or go after cancer. If you are going to put yourself through chemo, you want it to be as effective as possible. Always make your oncologist aware of everything you take during treatment. He may have good reason to nix some things.

Constipation and bladder irritation is another big deal during chemo. If your oncologist doesn't bring up some kind of bowel regimen for you before you start, ask him for one. It's usually the worst in the days following an infusion and having a plan in place to keep it from becoming a blockage is really important. The regimen, such as taking Miralax once or twice daily along with drinking at least 12 glasses of water a day is really, really important for the constipation  as well as flushing the chemo from your system to help keep bladder irritation from causing pain or incontinence. Be sure to enlist your family's help in making sure you're always drinking enough water. It can be a chore.

The effects of chemo are cumulative, so prepare yourself for the fatigue to last longer and longer each time. Have a plan in place for child care or housekeeping and don't feel guilty for things not being up to your normal expectations. The 1st day or two you'll probably feel fine, but by about the 3rd day after an infusion you have to expect to let others take care of everything for at least a week or two. You'll feel pretty good for a couple of days right before your next infustion and then back down into the well you'll go. It's doable, though. Keep that in mind; you'll get through it and life is good again on the other side.

I'm probably forgetting something, but think I've covered the biggie things I wish I had known ahead of time. Hope this helps. Good luck. We're here for you for anything else that comes up.

Amatullah
Posts: 36
Joined: Jun 2017

Thanks MaBound.  I have/had endometrial carcinosarcoma that made it to 8 lymph nodes in the pelvic area only (Allah (SWT) willing).  Since I don't have lady parts anymore, I guess I have lympatic cancer?  I actually don't know how that works.  I have lupus, fibro, no thyroid, peripheal neuropathy (without diabetes) and I pretty much figured that should be enough.  Silly me.  I spent days and weeks, reading all of the anecdotal experiences I could find.  I figured the doctor knew what to do to fight cancer, but the women had the most experience in how to keep it from doing more damage than necessary. 

I had the hysterectomy and I've had one chemo visit.  The hysterectomy was pretty easy.  I expected tons of pain and I was almost euphoric because I felt pretty good after.  Mentally I was so glad to get the cancer out and that was before I really knew about the labs, etc. 

Because my neuropathy is already pretty bad in my legs and feet, for the last 10 years and before chemo, I was really freaked out about making it too much worse.  My quality of life has been pretty compromised by the neuropathy and the Lupus, so I wanted to do all I can to prevent more damage.  So I showed packed up for my first chemo with a 50 pound backpack full of ice packs, ice booties, ice mittens and ice packs to keep the mittens and booties frozen and refreeze them.  Oh and Dr. Pepper, water and peanut butter and jelly sandwiches and a Kindle.  The night before and morning of steroids I took really were hard on my stomach, so having food in my stomach was better.   No one warned me about the labs for blood sugar and I was pretty shocked at my blood sugar numbers in the 200's instead of 80's  When I picked up the backpack, to go out to the car, I fell over (no harm).  It was pretty funny.  I don't do things half-way.  

Because of the neuropathy getting worse, the dr. cut my chemo down to a half dose for the first visit to see how I react.  I kept my hands and feet ice cold and had ice chips in my mouth 90% of the time and did well.  You can't read a Kindle with ice mittens on.  Next time, I'll download a video and bring my headphones, although I mostly talked to the woman next to me anyway. The acid reflux and stomach pain were the only real problems afterwards and gone in a week.  I didn't wear an ice cap because I don't care about my hair.  I'm 64 years old, single and a Muslim, so God (SWT) and I are the only ones who will know if I'm bald, lol. 

The real concern I have right now is chemo is on the first of August and it's going to be the full dose of carbo and taxotere(? sp).  I'm worried about it being a lot worse, because of some of those anecdotal stories that have been helpful, but some are brutal too.  Being in pain so much the last decade has made me less tolerant of pain rather than having a higher threshold or at least it seems that way at times.  It's kind of odd because I can't stand getting my nails done, because it hurts, but the hysterectomy didn't hurt much.  I think the neuropathy in my hands sends mixed signals.  Something I haven't really come across is, does each chemo make a person feel worse.  Is it accumulative or something you get used to?  Realistically, will my next chemo be twice as bad since it's stronger?  I realize there is no set answer and everyone is different, but do people talk about the second chemo as opposed to the first being different, worse, the same, etc. 

Except for being incredibly tired, which I often am anyway because of the Lupus, most things are back to normal.  Well normal for now.  My stomach is still a bit on edge and I think the chemo must irritate the bladder or the surgery did, because I feel borderline bladder infection, but I'm mostly okay.  Of course every twinge I have makes me wonder if the cancer has spread.  Ever since my surgery and the removal of 30 plus lymph nodes, I've noticed that the glands in my neck and under my arms are sore and I don't know what to think about that, but my Pet Scan was less than three months ago and the dr. told me even though it's sarcoma and more aggressive that "regular" uterine cancer, it doesn't spread and then grow enough to cause pain in a couple of months.  He told me I should worry about something else for awhile and then I can go back to worrying about that later, lol.  So if anyone recalls the difference between the first and 2nd chemo???  I always feel better if I'm braced for it.  I think for me, saying it wasn't as bad as I feared is better than saying it was much worse than I thought.  I really appreciate this forum and those of you who have stuck around even when the cancer is behind you.  Sorry this is so long.  Thanks!

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1479
Joined: Jun 2015

Amatullah, First of all welcome to the board and I'm so sorry you had to find us. This is a great group of woman who are willing to answer just about anything. So, please come back and ask away!

There is a thread titled 'Ladies Going Through Chemo' that documents several of our members as they went through each of their chemo treatments. I think it will answer a lot of your questions and will make you feel a bit better.

Like you said, everyone is different. While chemo is cumulative, it doesn't double or triple with each treatment. You will find yourself getting into a routine once you know what to expect. For many of us, the 2nd day post chemo day through the next several days were always the most difficult. Sometimes it lasted longer. For me, fatigue was always the hardest thing to address.

Again, welcome and please come back!

Love and Hugs,

Cindi

Amatullah
Posts: 36
Joined: Jun 2017

When I saw your pets Cindi, it made me remember the first thing I thought of when I heard the cancer diagnosis.  "I can't die because of my cat".  HunnyBunny (named by granddaughter, lol) is a beautiful calico and she was severely abused before I rescued her.  It took more than 2 years to get her to trust me.  She didn't purr for 3 years.  I had to go take care of my dad when he wasn't doing well and I couldn't have her there, so I left her with a 'cat whisperer', who actually socializes feral cats and finds them homes.  HB got used to me, but hid from everyone else.  I figured she would be okay with an expert.  For the 3 months she was there, she never came out, except at night to eat and the woman tried so hard to just get her to show herself.  No luck.  I had to go get her.  She was so skinny and sad.  So I just hid her from the manager.  She's still nervous but she's happy now.  The cat lady told me there was no way she'll ever adjust to someone else.  So I have to stay alive for about 8 to 10 years.  No choice, lol. 

Thanks for the information.  I've been reading here for days.  I do admit I always go look to see the last time people posted when I read the posts and I love seeing a recent date there, especially with sarcoma, since the statistics aren't exactly promising.  I was told in 2002 I wasn't going to live much longer and 15 years have passed and here I am, so what do "they" know.  It wasn't from cancer.  The lupus was trying to do me in, but I'm stubborn and inexplicably, it gave me a break.  Cute doggies.  I want to live for my kids and grandkids too, as well as the cat, but they're all doing well and thankfully they're all grown and independent.  I still can't quite believe I have cancer.  I thought I was just lazy.Cool  Thanks again.

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1479
Joined: Jun 2015

Amatullah, I think many of us who love our furbabies had that same thought. I know I did! My two guys are also rescue and had a rough start. They are glued to my hips and are quite spoiled now. While I know my family would miss me, I worried the most about my boys. They don't eat dog food (my fault) and who else would be willing to fix them homemade food? Or, use natural products to keep the fleas off? Way more work than using the pesticides! My prayer has always been to let us all live long, healthy, happy lives and let me at least outlive them. :-)

I'm glad your Lupus has calmed down to give you the strength to get through the frontline treatments. You are strong and will do well.

Take care and keep us updated.

Love and Hugs,

Cindi

Lou Ann M's picture
Lou Ann M
Posts: 996
Joined: Feb 2015

I am so sorry that you had to join this club, but you have found a good place to come.  The ladies here are excellent at listening and giving advise.  1st of all this may not be  lymphatic cancer.  Original cancers can metastize  travel to other places.  Microscopic cells from my Endometrial cancer spread to ,y lymphatic system and traveled to many different areas, but it is still endometrial.  2nd, Taxetere is supposed to be a lot better with Neuropathy than Taxol.  Hopefully it will be gentler on you and your poor feet.  You have already gone through so much.  You are strong and you can do this.  For me, I couldn't tell  much difference between subsequent treatments. I kept a journal because they did seem to be very predictable.  

Sending you lots of hugs, Lou Ann

Amatullah
Posts: 36
Joined: Jun 2017

Thanks Lou for the support.  I don't think there is much doubt that the primary cancer was uterine.  I had ablation surgery when I was about 45 for heavy bleeding and I've seen some studies about the possibility of the D & C surgery making cancer more likely or at least making it harder to detect.  I'd like to see them do more studies on that.  In hindsight, I guess I should have got a hysterectomy, but who knew.  Plus maybe I was going to get cancer anyway and at this point, I'm glad it chose a body part I was done using, lol.  Now if I can just keep my neuropathy at bay.  I used to have IBS pretty bad and I'm a bit worried about the radiation treatments too, but I'd still rather hang around.  My second chemo is on Tues.  I think I might have to have 4 since the first one was half strength and then a month of radiation and then 3 more chemo.  The hope is that breaking it up will help with the neuropathy.  I haven't read much on the radiation tx yet.  Again Thanks.

MAbound
Posts: 794
Joined: Jun 2016

I'd really stay away from the Dr. Pepper or any other soda while going through chemo. It's a highly acid drink and is only going to aggravate any reflux problems you experience big time. You'll be doing yourself a favor if you try to drink 8 to 12 glasses of water a day instead and give preference to eating alkaline foods (fruits and veges) over acid foods such as sodas, sweets, and baked goods. While protein is usually considered acidic, you should still eat that to help your immune system recover. Chicken and turkey are less acidic than beef and more easily tolerated. Just don't put any pepper on it because that's acidic too.

I'm sorry that you are going through chemo already having neuropathy and Lupus. I hope the booties and mittens work for you because they are a chore to change as they get warm, especially if you go to chemo without a helper. You might find that you'd have a lighter load to carry if you switch to a quarter block of dry ice instead of regular ice. I could buy that the late afternoon before a morning infusion and it would last until the day after if kept away from air exposure. It is also more effective for recooling the booties and mittens quicker than regular ice is.

Chemo effects are cumulative, but which ones seem to vary between individuals. If your neuropathy hasn't gotten worse with the first treatment, then odds are you are doing the right things to keep it at bay and should continue. 

Good luck and drink lots of water, water, water everyday...it really helps!

 

Amatullah
Posts: 36
Joined: Jun 2017

Too Much, Too Much!! Lol MaBound, I know Dr. Pepper is not good.  I did make a rule that I have to drink a glass of water for every glass of Dr. Pepper.  I noticed orange juice bothers me more than soda does. I haven't tried the low acid kind yet.  Gingerale helps.  I had a meeting with the oncology dietician and she said don't try to change the diet too severely at first because it's not a sprint.  It's more like cross country.  I should pace myself.  Treatment is hard and so is dieting or not eating things you love.  I know there are people who swear by vegetarian and all sorts of huge changes, but the dietician is right for me.  Sometimes I feel so sorry for poor Mellie (uh oh 3rd person, can't be good) and I make a horrible martyr.  I will up my protein and eat buckets of fruit.  I wish I could live on salad.  I already miss it, sigh.  I will eat almonds instead of cashews and if I don't drink enough water, I will single-handedly eat a watermelon to make up for it.  The dietician said 8 glasses of water is okay as long as I eat fruit and don't drink anything that ends up being a diuretic.  I don't do coffee and I drink mostly green tea.  I realize that's the minimum, so I shoot for that and consider all I do above it as a win.  We need wins. 

I don't know where you get dry ice, but that's a good idea.  Maybe it won't be so heavy!!  So at almost week three and my hair hadn't fell out.  I got up Thurday and was fine and by Friday morning, I looked like an old hag version of Annie Lennox.  Only the new growth was left and stuck straight up.  I had to laugh.  I was fixing some food for my sister and I wrapped a piece of masking tape around my head to make sure I didn't 'shed'.  I didn't think it would hurt so much to take it off.  Yoooowwww.  Bad idea, but less hair to shed.

I don't have a helper.  I could get one, but I have a terrible time asking for help.  My kids avoid the 'C' topic because moms aren't supposed to be mortal.  No dark humor for them!!!  I'm letting it sink in for a bit, but I'm already exhausted beyond the point of doing a lot of driving.  I sent my girls a really awful picture of me.  I prefer humor to worry or grief.  The fatique is the worst part and I just started, although the surgery, even though it wasn't terrible, left me really tired.  I lost almost 20 pounds for all of the fluid that I lost.  I called my surgeons office and they didn't seem to know what I was talking about.  The surgeon commented in his report that there was a lot of fluid and one of my lymph nodes was compromised.  I don't know if that was lymph system fluid or what, but about two weeks after the surgery, I started literally pouring milky liquid from my who-ha.  My family calls the girl part a noonie, but I think that was specific to an Oakie born in the 1920's.  My kids saw the dudes on Sesame Street sing the Noonie song and were laughing hysterically at it.  We had to have the 'talk' earlier than planned.  But I never figured out why or what was going on. 

Thanks again.  It really helps to hear and see others having a real life in the midst of this mess we call life.  And it's easy to find humor stuff in messie. Sealed

MAbound
Posts: 794
Joined: Jun 2016

Never think that any advice you recieve here is anything more than the sharing of personal experiences that helped us as we went through chemo. You can pick and choose among it all for what works for you. There are so many variables to this cancer and the ways to treat it that there are no guarantees that what helps or happens to one person is going to help or happen to the next. We are all unique and any advice given is just intended to give you options for what you are having to cope with.

I totally get the Dr. Pepper addiction. I've broken my habit many times over the years only to fall off the wagon periodically to have to go through withdrawal all over again. It's up to you to decide if it's worth having it in the face of any heartburn you are dealing with from the chemo. Mine was bad enough that I could barely eat anything more than watermelon, yogurt, and green beans so hopefully your's isn't so bad.

Don't be afraid to ask your family for help. It would probably actually help them to feel less powerless if you give them some way of helping you. I think we all encounter that "if-we-don't-talk-about-it-it-isn't-real" wall from our family members. That's why we find this forum such a relief. We don't get shut down no matter what we need, whether it's to ask questions, vent, share research, or share our ups and downs with each other.

Attitude is a big part of getting through chemo and you seem to have a very positive one using humor as you deal with what you are dealing with. Good for you! But remember, if you need to fall apart once in a while, as we all do, this is a safe place to do it. We'll be here for you whenever you need us.

survivingsu's picture
survivingsu
Posts: 134
Joined: Apr 2013

The one step at a time that others have noted is excellent advice!  It is pretty darn overwhelming until a plan is in place to focus on.  In my experience, working with the doctors, nurses, technicians on the plan was very reassuring.  I focused on my belief that they all could help and knew what they were doing.  If they told me I needed to dance a jig on a piece of cheese I would do it in a heartbeat.  I was eager to get through this, and I think this kind of self motivation helped me in the long run.  For me, I wanted the information simple and sweet, so I could do what was expected and go on to the next step, scan, test, transfusion or whatever.  One thing I did NOT do was spend much time researching about my cancer during treatment because the information on my rare form was outdated and dismal.  After treatment I learned more about that.  I knew ahead my tendancy to be a worry-wart, which would not have helped, so I was glad that I didn't subject myself to that information when I was at my most vulnerable.  

Be very kind to yourself and allow yourself to find what works best for you.  

Wishing you the very, very best,

Susan

Nellasing
Posts: 529
Joined: Oct 2016

When you go in you may want to ask about getting a port so that they don't have to use your veins- No one suggested it to me and I asked 2x before I got it but somehow I slipped through the cracks- I finally had my port by my 3rd treatment and what a RELIEF- you not only get stuck for chemo but for all the blood draws and my nerves simply got so sensitive that any little stick caused me great pain and anxiety- my port is my buddy!!  It's another quick in and out procedure.  I will not remove my port- they use it for everything - even my recent heart procedure they used my port.  Just my thoughts Wink  (((HUGS)))

dgrdalton's picture
dgrdalton
Posts: 46
Joined: Jun 2017

I understand the feeling extremely anxious! Tomorrow is my appointment to get the chemo plan set up. This site has been wonderful for me. Hoping tomorrow goes well for you!

Hugs and prayers!

Nellasing
Posts: 529
Joined: Oct 2016

we'll be thinking of you as you get your plans set up.  Sending prayers that you all sleep well tonight and that tomorrow goes off without a hitch.  Keep us posted.   (((HUGS)))

dgrdalton's picture
dgrdalton
Posts: 46
Joined: Jun 2017

Diropa, I hope your appointment went as well as mine. My gyn/oncologist had reviewed my pathology reports. I was diagnosed as stage 1A uterine papillary serous. He said the cancer was only found in a polyp in the uterus. He had decided instead of chemo to go with observation. In 2 months I get a baseline CT, CA-125 and pelvic exam. I am truly grateful and relieved. 

This forum has been a blessing and I will be praying for you kind and giving ladies!

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2522
Joined: Mar 2013

Uterine papillary serous carcinoma (UPSC) is an agressive form of uterine cancer and there are quite a few of us diagnosed (dx) at Stage 1A who had chemo to 'get' any little cells running around.  Of course, everyone has to decide what is best for them

bocabird
Posts: 4
Joined: Jun 2017

I was diagnosed Stage 1A Grade 3-decided to get a second opinion from a renowned facility in Florida and was told it was actually Stage 2 since the cervical stroma was involved.  The pathology where I live said no cervical involvement.  Anyways I am doing the carboplatin-taxol 6 cycles then 3 rounds of bracytherapy. Am having a rough decision to do taxotere or taxol.  Hear there is a alopecia issue with taxotere and more neuropathy with taxol.  Any thoughts?

 

Editgrl's picture
Editgrl
Posts: 903
Joined: Jun 2015

the degree of neuropathy varies greatly among individuals.  I was fortunate in that I only had mild numbness in my toes and fingertips from Taxol that eventually went away.  Others have had much more severe and longer lasting experiences and Taxol does have a longer list of potential side effects than Taxotere.  I believe most studies show that the efficacy of both drugs is pretty equal.

MAbound
Posts: 794
Joined: Jun 2016

I was switched to taxotere from taxol when I developed intense neuropathy after the first infusion of taxol. Everybody reacts to these drugs differently so there is no way to know ahead of time what you'll have to deal with during treatment.

The thing is, adjustments can be made to dosages, delivery times, and type of drugs used to help you get through chemo ok. There are also things you can do for yourself to be prepared for chemo that I outlined in an earlier post in this thread.

I have all of my hair grown back after the taxotere, so that side effect is a possibility but not a given. In the scheme of things, living with  a worsening neuropathy was more of a concern to me than having to wear a wig for the rest of my life. You have to decide that for yourself, but I'd make that decision taking into consideration what your oncologist thinks is the best starting point based on testing done on tissues removed during your surgery. Adjustments can be made as you progress.

janaes
Posts: 724
Joined: May 2016

These wonderful ladies are right and devaloping neropathy is really different with each person.  I was on taxol my first three treatments but by yhe third treatment my neropathy was reacing the ball of my feet so my doctor changed my drug to taxotere.  It never bot worse after that.  I will tell you that the taxotere did make me feel sicker and had a harder time eating.  It was worth the trade off though because the sickness went away trreatment  and I am still after almost a year from chemo  (In september it will be a year) and I still have my neropathy.  The neropathy doesnt stop me from doing what I need to do.  I was working a full time job this summer and although the neropathy bugs me I can still do what I need to do.

Best of luck to you.  I hope you are one of the ones who doesnt even have to worry about the side effect.

Janae

MAbound
Posts: 794
Joined: Jun 2016

This is one iteration of uterine cancer that, because of it's very aggressive nature, I'd get 2nd and even 3rd opinions about what treatment options are available to you. This time now, while it's been discovered in a very early stage, is your best shot at killing it before it can reassert itself as it most likely will while waiting and watching. A watch and wait approach might not be in your best interest even though you'd initially be happy to get out of going through any surgery or other treatments.

This is a really nasty version of uterine cancer as you'll see the more you read earlier postings on this website. There was a post a ways back where some were wondering why hysterectomies aren't done prophylactically when we no longer really need our uteri. You may want to consider this since you're body has given you this heads up that something is brewing. Chemo in addition to surgery wouldn't be excessive treatment either because UPSC is that tricky of a ******* to get rid of. If it were me, with what I have learned in the past year about it, I'd want to throw the kitchen sink at it at this stage. 

You may also want to get some genetic testing done to see if you have Lynch Syndrome that puts you at higher risk for this and other cancers or other genetic mutations you may not be aware of. That kind of knowledge may help guide you and your doctors with what direction to take with the options you have to choose from. 

Forgive me if I'm being a bit of an alarmist here, but I'm a worrier and I really want to see you have the best shot possible of not facing this getting worse when it sounds like there's a great chance for you to beat this beast in its infancy if you go after it with both barrels blazing now. It's a stubborn one to defeat. 

Wishing you all the best and many years NED!!

 

MAbound
Posts: 794
Joined: Jun 2016

Well, I really put my foot in it this time! I'm not on this board as often as I used to be and didn't go hunting for your prior posts before replying. I see now that you already did have a hysterectomy. So sorry about that!!

I still feel strongly, though, that you still need to fight this aggressive form of uterine cancer with equal aggression especially with the opportunity to do so in such an early stage. It gives you the best shot at defeating it and enjoying being NED for the many years you have left to enjoy of your life. It's always so hard to read of recurrences here and I really don't want to see yours added to the list! The success stories lift us all!

dgrdalton's picture
dgrdalton
Posts: 46
Joined: Jun 2017

No problem MAbound! I did try to move this discussion to the thread about UPSC, observation or chemo. I was afraid I had taken over Diropa's thread unintentionally. I will talk more with my gyn/oncologist in September about my treatment. Appreciate the concern.

ConnieSW's picture
ConnieSW
Posts: 1407
Joined: Jun 2012

I'm with MAbound and wouldn't wait till September to get more info. You may still choose not to do chemo but at least you'll know you had all the facts to make an informed decision in a timely manner. 

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1479
Joined: Jun 2015

dgrdalton, we rarely stick to the original subject so please don't worry about adding to the discussion. That is one of the things I love about this group of women. We are open to discussion and don't have rules about when and where. Everyone's input and questions are welcome. Glad you found us!

Love and Hugs,

Cindi

Soup52's picture
Soup52
Posts: 888
Joined: Jan 2016

Prayers for you. As others have said be prepared for a marathon. I'm one year out from treatment after 111c clear cell, another agressive form. CT is clear so far. We will be here for you throughout your journey.

 

derMaus's picture
derMaus
Posts: 535
Joined: Nov 2016

I finished frontline treatment of 6 cycles carboplatin/taxol in April. Starting with the third cycle, I had neuropathy in the outer toes of my left foot and loss of sensation in my fingers; the last dose of Taxol was reduced for that reason. Fortunately, the hand issues resolved after chemo ended and the foot remained stable. My post-chemo scan revealed mets in my retroperitoneal lymph nodes, so 8 weeks later I was back in treatment with chemoradiation using using low-dose Cisplatin. The neuropathy came back full force with the first dose of Cisplatin and my right foot was also affected. At that point I started taking Glutamine 2x day, with the permission of my radiation oncologistand nurse navigator. I'm generally sceptical about such things but I can attest that it really did help. I completed the Cisplatin two weeks ago and only had mild loss of sensation in my fingers, which was gone in less than a week. Neuropathy in the right foot never really took hold and is now gone, and the left foot remains stable. Here's an article about Glutamine, there are many more out there if you feel is may be something you want to explore.  http://theoncologist.alphamedpress.org/content/12/3/312.full

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2522
Joined: Mar 2013

derMaus, this is good information on the Glutamine.  I hope I remember it when someone comes looking for a tip.

Nellasing
Posts: 529
Joined: Oct 2016

I have lasting neuropathy in mostly my right foot- some in my left and I keep it mostly under control with Glutamine also.  They increased the delivery time of the taxol when I continued to let them know about the neuropathy and finally cut the last dose.  I also found that about 6 months after finishing chemo that sometimes the glutamine wasn't keeping it away completely and found that I was low in B12- so I now take that under the tongue daily and it helped me SO FAST I was shocked.  All the best as you decide which way you want to go.  (((HUGS)))

derMaus's picture
derMaus
Posts: 535
Joined: Nov 2016

Good to know about the B12. Is there a specific blood test to check that?

MAbound
Posts: 794
Joined: Jun 2016

It's just called a B12 level, but it really isn't that helpful because it measures both active and inactive B12 levels together to get a result without distinguishing between the two. There is a relatively new test out there called an Active-B12 EIA test, but not many labs offer it yet. I could not find any who did in my geographic area. Here's a link to a brochure on it: 

http://www.active-b12.com/wp-content/uploads/2015/08/Active-B12-Brochure-V3-04_2012_1.pdf

and another from a company in Australia:

http://www.clinipathpathology.com.au/media/76367/vitamin%20b12%20deficiency.pdf

Two other tests that I was told by a lab tech that could be alternates to determining active B12 deficiency are called an MMA (Methylmalonic Acid) and Intrinsic Factor Antibody tests. The don't measure B12 levels directly but instead point to possible defiency when they are abnormal. It's unlikely that a doctor would prescribe these tests however unless you are actively symptomatic for pernicious anemia because of insurance guidelines for ordering these tests. 

There's a helpful website called labtestsonline.org that explains many lab tests that you may want to explore.

 

derMaus's picture
derMaus
Posts: 535
Joined: Nov 2016

Thank you so much, this is very helpful. I'm going to follow up with my doctor. 

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