feeling extremely anxious

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. 

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

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.

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   (((HUGS)))

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 said:

Diropa, I hope your

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!

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

Diropa said:

thank you

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.

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.

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.

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.