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Uterine Papillary Serous Carcinoma (UPSC): any others here???

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

I was diagnosed with UPSC, and had a total hysterectomy and 25 lymph nodes removed for staging 2 weeks ago. The cancer had penetrated into the 2nd half of the uterine wall and into 1 fallopian tube, but my cervix and ovaries (all cut out now) were clear. One of the 25 nodes removed showed microscopic traces of the cancer, jumping my diagnosis to Stage 3-C. So now I have another 2 weeks to heal from my surgery before radiation and chemo begin. I had absolutely NO symptoms; this was originally caught during a routine annual PAP test this July, (which apparently never happens). UPSC is very resistant to treatment with a high incidence of recurrance. I guess I was hoping to find someone else here with the same cancer type that would tell me that the upcoming long months and months of aggressive radiation/chemo will allow me to greet the spring cancer-free. I can't find anyone who has this rare cancer.

pjba11's picture
pjba11
Posts: 192
Joined: Nov 2008

I had the same objection of the white count and immunity... but I knew my cancer was aggressive...very aggressive. I opted to go with the radiation 'sandwiched' because I wanted to have both the radiation and the chemo working full time. The neulasta is given as a shot the day after chemo and it does protect the white cells/ immunity just fine. ($5000.00+ per injection) I really needed the reassurance that both of the chemo and the radiation worked together since many articles stated that our type of cancer may resist chemo. The drops I take are called Z Natural. They can be used with both chemo and radiation. I have talked to the scientist who has created them many times and he does know how they interact. They are my mini chemo after all other treatment stopped. I also do Esiak and multi vitamins with calcium for the bone damage. Fish oil is good too. I take the drops 3 times a day the esiak every day and the rest when I think of it. I am very surprised that none of you are on nuelasta especially as we enter cold and flu season. I would be very concerned that if your counts get down your treatments will stop and with our aggrssive type that is not good.!! Neulasta helps protect you from this type of invasion. This is my story and I am sticking to it!!!! :)

pjba11's picture
pjba11
Posts: 192
Joined: Nov 2008

It will take more than a lack of hair to deminish you!!

deanna14
Posts: 734
Joined: Oct 2008

I agree!

Can you get the supplements at places like GNC or do you have to get them from an herbal store? Did your doctor have any objection to you taking them. I've been told not to take a multi vit during chemo because the antioxidants have the potential for interfering with the chemo?

pjba11's picture
pjba11
Posts: 192
Joined: Nov 2008

It will be fun to see the new fashion statements coming out with you three!! You may be surprised how 'creative' just a bandana can become!! Deanna I wish I knew more about the vitamins and chemo, but I do not. I took the essiak and the Z natural all the way through chemo. The vitamins and calcium I was was not as strict with. My oncologist looked at the Z natural 'ingredient' list and was fine with it. One of the reasons I liked my oncologist is that she had a very open mind. She always encouraged me that I had made good choices with the plans I made. She knew we had to be aggressive and that being that aggressive with would have to be monitored closely. It is a good feeling to have a Doctor really talk and listen. Many times we still talk for at least 2 hours when I go in for my 3 month scans. She always sets my appointment up for the end of the day. I get my scans and CA125 done mid morning and then go shopping (we live quite a distance away) while they read my tests and then I get to see her about 3:00. She has always been wonderful for information. Before she came here she was in Mayo. If I have questions that she can not answer she calls her past partners at Mayo and then I feel like I have the best. I hope you have a good doctor that you can call directly anytime. It is a great comfort.

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

Should I be worried? My temp was 99.8 last time I took it. I have a very runny nose and sore throat, nothing I would ordinarily be concerned about. But I'm to have chemo again Monday. Any recommendation? I phoned my oncology nurse and she said NOT to take anythung that would mask a rise in temperature and to call immediately if my temp reached 100.5.

pjba11's picture
pjba11
Posts: 192
Joined: Nov 2008

This fever is not something I know about. I was not sick during chemo. Once again the neulasta just after each chemo was supposed to cover this and it must have helped me stay well. I sure hope your Doctor can tell you the pros and cons of using it. I was so afraid that I would too get sick and not be aggressive enough with the chemo. Let's hope that this will pass and not change your count or raise your CA125. (I noticed that this reply is not in sequence so I hope it shows up in the right place.) Please take extra care of yourself and get well.

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

I must be too impatient and keep clicking on the SUBMIT. I'm using EDIT to delete this double post. Sorry.

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

As instructed, when my temperature hit 100.5 a little bit ago, I phoned the 'on call oncologist'. He said that if this were the MIDDLE week between chemos, a temp of 100.5 would require me to come in to the emergency room tonight to have my blood drawn for a white count. But since I am so close to my chemo date and I shouldn't be all that vulnerable this week, this is probably just a cold. I am to take my temperature again at 10:45 tonight and come in to the ER only if it hits 102 degrees. My husband is pacing the floor worrying and cursing my son Eric who came in for Thanksgiving with a bad cold.

DEANNA: Your photo is GOEGEOUS, such a beaytiful bride!

I tred to change my photo to show you all my new baldy-head, but I must be doing something wrong. Do I need to first delete my old photo? I tried that and uploaded the new photo, and it said the change was made, but I still see my old photo up there. Any hints?

shortmarge's picture
shortmarge
Posts: 295
Joined: Nov 2008

Hugs and Prayers Linda, take care of yourself. I like your new picture. I plan on posting a photo when I am completely bald. My hair is so thin it looks terrible, I think bald will look much better. HATS ARE ITCHY!!!

I'm with you in spirit. Off to chemo round #2 tomorrow.

Hugs...

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

The photo I posted was taken at my hairdresser's. I agree that my head will look better when the hair is ALL gone rather than these pitifully thin remaining hairs with my head clearly visible through it all. The hairdresser left my bangs, so that I'd have a little bit of hair peaking out from under my hats, since the 'bangs' hair doesn't seem to be falling out as much yet. I also have a patch of much thicker hair in the back that is hanging on and really looks awful. I have little soft beige 'sleeping hats' (hat liners actually) that I wear around the house most of the time, since we are all trying to get used to my new 'look'. I see lots of stray hairs inside my hats when I take them off, and I'll bet my chemo Monday does the trick and I'll be a 'cue ball' by this time next week. I haven't put my wig on yet. I need to get comfortable with this new "me" before I start disguising myself, you know?

My temperature is down to 99 this morning, and I'm so glad I didn't have to make the late-night run to the ER last night for blood work. The oncologist told me at my 1st chemo that a low white count during the pre-chemo testing triggers an automatic hospital admission. My sinuses are killing me and I used most of a full box of tissues last night blowing my nose. I will be holding my breath when I get my pre-chemo blood work Monday. I'm going to ask about Nuelasta, although the $7,000/shot cost is staggering and I'll bet my insirance company will balk and refuse. But maybe a low white count after Round 1 will help me get it covered??? 5 more chemo rounds means a $35,000 Nuelasta cost if I start getting it. Isn't it horrible to have to even hesitate because of the cost? If I need it, we'll just have to bite the bullet. But there are sooooo many other things I'd rather blow $35,000 on!

shortmarge's picture
shortmarge
Posts: 295
Joined: Nov 2008

My blood was good except my liver. They are very concerned because it is elevated (very high). We came to the conclusion that it has been the tea that I have been drinking (green tea) so I have to go back on the 15th for blood work. The say that is when you are at your lowest. My CA125 was 17.25, wahooooooo!

Glad you didn't have to make that hospital trip.

Hugs

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

I will be soooo thrilled if I manage to score a CA-125 like yours, Marge! What was your number before this latest one? I'm already planning to rationalize, if my CA-125 goes up when they draw blood Monday, that my numbers were affected by my cold. I'm so afraid that my cancer isn't being killed by the chemo. It is a WONDERFUL comfirmation when your numbers drop into normal ranges after just 1 round of chemo. I am so happy for you!

Please, Marge, tell us a little more about this liver thing. I didn't even realize that doctors were looking at your liver in the pre-chemo blood work. I think that all chemo drugs are filtered out through your liver, and can imagine that chemo would be hard on the liver. But this isn't anything anyone's ever mentioned as a side effect. Do you feel okay? ((((Marge))))

shortmarge's picture
shortmarge
Posts: 295
Joined: Nov 2008

They gave me a book about chemo and I did read about not taking any herbs because they react to the chemo. I never even thought to think tea is an herb. They also told me not to eat or take anything with a mushroom base and dang if I didn't eat something Wednesday with mushrooms. I have to watch my skin tone and if it starts turning yellow and if my back starts to hurt I have to call the doctor. My back was hurting this week but I thought it was old age and I was feeling great. I go back on the 15th for blood work to see if it is still elevated, if it is they are going to adjust the chemo. I usually drink a lot of water but it was tasting like metal to me so I made ice tea out of green tea. Guess I'm going to get use to the metal taste. I put some lemon in it tonight and it taste better.

My CA-125 before surgery was 33, the blood work on Nov. 11 showed it to be 45.5 and now it is 17.25.

Your hair is beautiful.

Hugs!

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

My grandson (6 years old) stopped in for the first time today in 3 days, as he has a cold too. He just wanted to open the 3 little tins on my Advent Tree and get his little count-down-to-Christmas prizes. I had a hat on when he arrived (it's COLD here!), but whipped it off to show him my balding head. Poor little thing immediately turned away from me and whispered "Why did you do that to your hair, Grammy?" He seemed shaken up at first, so I put my hat back on, and within a few minutes he was asking for a ZipLock bag for his little prizes and seemed to be over it. I guess you never know who will be freaked out.

pjba11's picture
pjba11
Posts: 192
Joined: Nov 2008

Lot's to deal with for all of you. Glad you did not have to go to emergency and suck up more germs. Marge, So glad #2 day is over for you. Have you done a port or are you doing one at a time? I had a slight elevation in my liver. Never had to address it so I have nothing to compare for you. Wonderful to hear you are able to get your CA125 results back in the normal range. Linda don't be concerned or mislead by your CA125 we are all so different. Before I had surgery and my cancer was 1C my CA125 was 7. Now it is averaged out at 12. The highest it ever got was in the 40's.(?) If you get your CA125 done at different labs they can very alot also. If you get them done by the same 'method' they will have a truer outcome. Also if your CA125 is not a true reading for you the insurance companies will pay for scans more often. Marge your picture is nice too. You look different from the other picture though. You are all pretty women. This hair thing is ongoing. It seems we will all have a story or two about it. Here is one of my experiences. My neighbors/good freinds have a grandson (about 4 years old) who in my opinion is always testing which button to push... he is a INSTIGATOR for sure and a screamer... but his mom thinks his halo always shines. One day while I was with him at his grandmas he saw me take off my wig.... hot hot day. Then I put it back on. He was amazed. I took it off again and let him wear it. Then I told him that his moms hair could do that too, all he had to do was go home and give her hair a real HARD jerk and it would come right off for him..... Never heard how much of her hair came 'off' for him!! I know.. It was mean. But if you knew this child you may see more of my side. Mean old grandma!! Wishing you all good luck and wellness this coming week. ps Linda my insurance had no questions about the nuelasta, I had been concerned too when I saw the bill!! I thought for sure it was a mistake and that the injection was $50.00 or even $500.00 not $5,000.00. :(

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

You are too funny, Peggy. There's a little naughty streak in you, girl! I love it!

Marge, I drink tea all the time! Green tea, black tea, all kinds of herbal teas. I had no idea that was a no-no. I am trying so hard to stay hydrated so that my veins stay good enough to forego the port. I thought tea was one of those cancer-fighting wonder 'foods', anyway. I am shocked, and will have to change my ways. Right now I'm chugging cranberry juice because of my cold and sore throat. Juice always makes me feel a little better. It's funny how your taste is affected. I just ate a tangerine and it tasted so bitter. I am anxious to get my 2nd round of chemo behind me. Are you buzzing from the steroids? I will be up all night for 3 days, scurrying around like a busy bee all day, crashing hard by day 4 if it's like last time. ((((Marge))))

Deanna must be honeymooning; she hasn't been in that I saw. I'm glad.

shortmarge's picture
shortmarge
Posts: 295
Joined: Nov 2008

No I wasn't buzzing from the steriods yesterday, I think the benedryl got me. I slept almost three hours during chemo and was tired when I got home. Went to bed around 11:00 and slept until 4:45, having liver problems might be making me tired too. I have a slight headache this morning but otherwise feeling really good. Did not have that real groggy head like the first time but like I said before I think I was still recovering from surgery and was having some sugar problems. No nausea at all. I hope that fourth day isn't as bad as the last but the nurse said that if that is what happen the first time that usually is your pattern. My back does not bother me today and I'm not yellow. I drank almost a 1/2 gallon of water when I got home yesterday, going to flush my system out!

Today is my son's 28th birthday, wow time flies. I'm going to fix him his favorite mac and cheese. He was in the Army and in the intial invasion of Iraq (March 20, 2003). I really worry about him and it makes me sad to see how bad this war has affected him. He is finally getting help and health care. He went for his first physcial in four years and they told him he has to go every six months because they have been exposed to radiation and I believe they were exposed to alot more then that. I know he is really worried about it especially since he is watching me go through this.

Linda, they check your blood for your red blood count, white blood count, clotting, electolytes, kidney function, liver function and tumor marker. These are the important ones to them. It's the way they know how to adjust the chemo or whether you are going to get chemo that day or not. They check so much more but those are the important ones for them. They gave me a print out of my results and explained everything to me. I think they thought I was going to freak out about my liver results and I just said "oh well just another bump in the road, we'll fix it and move on". I'm going to buy some ginger ale today and try to avoid taking any nausua medicine. Give my liver a chance to settle down!

My cousin who is fighting breast cancer gave me a book call "The Welless Community; Guide to Fighting for Recovey from Cancer" by Harold H. Benjamin, Ph.D. I highly recommend it. My husband is even reading it and is finding it beneficial for himself.

Hope y'all have a great day. MIND, BODY AND SOUL.

Hugs

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

Thanks, Marge! I ordered the book from Amazon. As much as I research, I am continually amazed how many things I DON'T know about what we are going through, & knowledge is power.

My daughter-in-law's sister did 2 tours in Iraq as a member of the Air Force, leaving behind her little baby boy and missing his first Christmas. Poor little thing was in daycare 12 hours a day because his dad had to work, and even now that his mother is back with them (stationed in Germany) he is an aloof child that refuses to share toys or even play with others and I worry that he was separated during an important bonding time. The family came here and visited 2 weeks before they left for Germany, and that beautiful little boy definitely has social issues that may require outside professional help; I hope not. War is hell on everyone affected, no doubt about it.

shortmarge's picture
shortmarge
Posts: 295
Joined: Nov 2008

Couldn't stand the straggling hair so my husband shaved the rest of my hair off.

BALD IS BEAUTIFUL!!!!

Hugs...

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

You've got a good-looking head! (I must have heard that from a dozen people since my hair fell out! What a strange compliment! HA! But you really DO look good!) I don't think I'll even need to buzz off the rest of my hair. I have half as much hair now as I had in my 'baldy' photo I posted. My super-thin 'dandelion puff' keeps coming out every time I take off my hats. Today I decided to go into town and shop for special Christmas cards for my husband and kids, and so I put on my wig for the first time since my hair started falling out. I did my makeup and I actually thought I looked almost PRETTY for the first time in quite a while. And everyone was so glad to see me out and about. (I live in a small town so everyone knows me.) I was trying to go around bald at home to get used to my new look, but I have to say, I really think I'll be wearing my wig now more than I thought. It gave me a little lift, a nice surprise.

They didn't give me Benedril in with my chemo. Maybe if I tell them about my sleepless 'hampster days' from the steroids, they'll give me some on Monday.

deanna14
Posts: 734
Joined: Oct 2008

Bald is beautiful!
I just thought I would pop in and say hello. I've been trying to keep busy and am making an effort at not worrying. I am a worry wart and lay awake at night worrying about what might be or happen. I have to stop that! So... We put up our Christmas tree today, it is soooo pretty. I also did some much needed cleaning. I tired so quickly and a lot of the deep cleaning has gone undone. My husband is a great help around the house and he does so much. I think that men can't see cobwebs or they are better at ignoring them. I got them today! Now I'm sitting in my chair with my feet up, hoping that I will be so tired that I won't lay awake in bed tonight.
Tomorrow I am going to start my Christmas candy and baking. I'm excited about that.
I hope you are all feeling okay. Take care.

Hugs to all!

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

The pre-chemo steroids are already working their magic, and I woke up early artifically jazzed up and full of ideas and steroid-induced energy: my chemo 'hampster days' have begun again. I was washing my face at 6 AM in my red bathrobe when I got the idea of doing a Christmas photo with the red Santa hat, and had to dash right down (husband sleeping blissfully) and pose and try and hold the digital camera out there to get a good photo. It's HARD to do a self-portrait indoors with a flash. Most of the attempts got really blurry. The big shadow is my arm holding out the camera. (I have to hit 'REFRESH' under 'VIEW' to see the new photos.)

I will be racing around following up on a million other steroid-enduced 'great ideas' for the next couple days before I crash last Wednesday. But now I must gather up my long list of questions, my special snacks and snuggy blanket, a book to read, my tissues for my leaky nose, and get dressed in comfy sweats for a 6-hour stint at chemo/hemo. Wish me luck with my numbers. Waiting for 'the numbers' is SOOOO much scarier than the needles or even the poison pumping into my veins!

deanna14
Posts: 734
Joined: Oct 2008

Good luck today. I pray your numbers are good and you are able to receive your treatment. I love your photo, so Christmassy.
Take care of you...

Hugs,
Deanna

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

I'm just back in from my long chemo day, but very happy with my day. All of my numbers were good: white count, platelets, everything! The best news was that my CA-125 dropped from 90.5 down to 47. I know this is not a reliable tool, but I will accept and BELIEVE all good news!

I had a fairly long discussion with my chemo oncologist this morning. At the time he didn't yet have my CA-125 yet, but he did have the rest of my numbers from this morning's blood work. He said that my strong white count doesn't yet warrant Neulasta, and my good platelet mumbers do not warrant Procrit (more on Procrit later; that's another long story). I asked about the Avastin, and he said that he uses Avastin for many of his ovarian cancer patients, but has seen bowel preferations with some Avastin users and so never prescribes that drug lightly. He made it clear that he believes it is in my best interest to take only the drugs that my numbers indicate so that we have less side affects to deal with later. I guess I agree with that.

We talked about sandwiching the radiation into the chemo. Because he didn't yet have my CA-125, he admitted that this was currently already something he was considering for me. (1st I heard that!) He told me that if my CA-125s went up this round and again next round, they would do another CT-Scan to see if they could find out why; and would asssume that the chemo wasn't keeping up with a tiny new cancer beginning to grow somewhere. Hopefully the CT-Scan would pinpoint where the tiny new cancer is, but if not they would assume it is in the pelvic area since that is where the involved lymph node was. And he would probably interrupt the chemo after the 3rd round and try external radiation to see if that could get my CA-125 down into normal range. Then we'd get back to the 3 find chemo rounds, and then come back to the internal radiation. (Just as Peggy suggested!) All of this is back OFF the table for now unless my CA-125 goes up during my pre-chemo Round 3 blood work December 29th. He also said he only rarely does radiation concurrent with chemo because it is so hard on your body, and did not think I would be able to tolerate chemo and radiation at the same time.

During this conversation where I was getting this somewhat disturbing information that I brought upon myself with all my pointed questions, I asked him one more tough question. We were talking about the Avastin and how similar our cancer and treatment is to Ovarian Cancer. I asked him flat out if UPSC has a similar prognosis as Ovarian Cancer, or does UPSC have a better survival rate? He looked me square in the eye, took a deep breath, and said "They have similar prognosis; UPSC has a prognosis no better than ovarian cancer", but then he followed it up quickly with "but that's just statistically; that's not YOU. You have an excellent prognosis." Still, his statement will haunt me in my darkest hours. I hestitate to even share it, but I also follow it up with "But that's not OUR prognosis!! Not for any of us!" We have to remind ourselves that this UPSC cancer has no symptoms and that we were all lucky enough to have our cancer found by accident before it created a tumor elsewhere. Most UPSC patients get diagnosed at very late stages which really skews the UPSC statistics. We all have a very good shot (88% cure rate was the latest stats I found for UPSC patients getting our aggresssive treatment under the direction of a Gyn/Onc.) We'll all be in that larger 88% group; I KNOW it!

We talked about supplements. He encouraged me to get back on my multiple vitamins and calcium with vitamin D. He didn't think my red count warranted me taking iron now. He said that he does not prescribe outside of Western medicine but had no bias against it as long as I am bring in anything and show him before I take it and get his opinion. I specifically asked about Peggy's "Z" supplement, and he said that he had no problem with me taking that, just to bring it in to him to look at before I take it and that he has other patients that take it with his permission. He said that there were many tests run on alternative drugs and many of them are very good. He cautioned me about the cost, which I've altready looked at and the cost wouldn't stop me from trying it. So it looks like I have some shopping to do!

One more good thing he told me. I confessed that Vic and I had gone ahead and 'done the deed' without pre-approval from anyone, reassuring him that we'd used a condom, which was new and wierd for us. He asked WHY we used a condom, and I told him that I read that in the cancer booklets they handed out to us. He laughed and said, "Use a condon if you're having sex with random strangers. Otherwise you have my blessing to have intercourse with your husband without an internal exam and without a condom!" HA! Vic was all smiles!

This is already SUCH a long post! I'll tell you the Procrit story and about the new friends I made at chemo tomorrow. Or if I am truly in my 'hampster days', and sleepless, later on tonight! I was doing Christmas cards and realize that I don't have addresses to send a greeting to my dear friends here. Anyway I could get your mailing addresses? (email: lindapro@ptd.net)

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

I took you up on your suggestion that I register at Heavenly Hats, and I got my box of really VERY cool hats in today's mail! Thank you for the idea! Of course, I felt really guilty to be taking free hats when I can still afford to buy my own hats. (That may change once my health insurance comes up for renewal!) So I wrote them out a check for a $50 donation and had Vic take a photo of me surrounded by my 5 new hats that I enclosed with my donation. They really try and send you what you note that you like. Marge should do this if she hasn't; it's fun! Thanks, Deanna!

No one has been in all day. This website is moving like a slug the last few days. I miss you guys, but at least I've 'edited' away all of my duplicate posts with a lot of chit chat. HA!

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

I am doing my Christmas cards and realize I don't have a mailing address to send my dear Marge a Christmas card! I hope you see this post, Marge or if Deanna or Peggy have your address and see this, please get it to me. I can't forget MARGE on my Christmas list! Ho Ho Ho!

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

Procrit is another of those incredibly expensive ($7,000 per shot) possible additions to a chemo regime, added if your platelet counts cannot be controlled to a satisfactory level by transfusions. I never heard of it until my son came over, very excited, with 4 vials of it and 4 hypodermic needles. Someone where he works had to take it with their chemo and was given a prescription for 6 vials. They only used 2 vials before their platelets were okay again, and had $28,000 worth of paid-for medicine in their refrigerator with a 2010 expiration date. When they learned that I was having chemo, they gave it to Jake, just in case I would need it. It has to stay refrigerated and never be shaken and they had been very careful, knowing its $$ value. Jake was so excited to be able to give me such a valuable gift that I didn't have the heart to tell him that I would NEVER shoot anything into my arm that wasn't prescribed especially for me. But I did have 2 nosebleeds this month, and I have a long history of mild anemia and the last 2 times I went to donate blood, they wouldn't take mine because of it. So I decided to tell my oncologist I had this, without naming names. WELL, as it turns out, this kind of thing happens all the time! People NEVER toss valuable drugs, and he told me they SHOULDN'T. They have a special drug bank at the chemo center where people turn back in medications they didn't use, and the hospital then has the option of giving out these super-expensive drugs as 'samples' to people without insurance or whose insurance refuses to pay for them. So, on December 28th when I go for my next chemo, I am donating the Procrit, And if I need it, and am not covered for it, maybe it will still be there for me. But my oncologist says he considers Procrit a 'last resort' drug and has less dangerous options to try to raise platelet levels that he tries first. Amd my platelets currently are really good. I took iron pills daily in preparation for my hysterectomy and then had very little bleeding, so I think that iron fortification is helping me now. In fact, the oncologist said I don't even need to take iron supplements currently and advised against it. So that's my Procrit story. And now you know not to toss any valuable drugs you have to buy if you don't need them.

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

My granddaughter, when she saw this photo, asked me, dead serious "Are you trying to be Jack Skelington, Grammy?" (the skeleton that dresses up like Santa in "The Nightmare Before Christmas") HAHAHA! She's so RIGHT!! I hadn't thought of it myself, but I look just like him in this photo! HA!

deanna14
Posts: 734
Joined: Oct 2008

Hi Girls,
You have been kinda quite the last couple of days. Hope you are feeling okay post chemo, or as okay as possible. Hang in there.
I had my simulation yesterday for internal radiation. It was not the most pleasant thing I have ever been through. At least it is one step closer to being done with radiation!
Hugs and prayer,
Deanna

shortmarge's picture
shortmarge
Posts: 295
Joined: Nov 2008

Did my first on Monday and go again today. I know the not so pleasant thing. I went home and beside the fact my ankles hurt soooooo bad I cried and cried to my husband. It doesn't hurt but you feel a little violated... But you gotta do what you gotta do!

Love you picture, always wanted to do that.

MIND, BODY AND SOUL.

Hugs

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

We may have to take my questions 'off board' because I can't even (maybe I don't want to!) imagine what internal radiation would even be like. I also can't imagine how to use a dilator. I feel unprepared for what is ahead. If you know a good internet URL that 'tells all', please let me know where to go and get the scoop. Or if it's not too personal (and we've set that bar pretty low here already; HA!) please email me and tell me about what to expect because I do so much better when I'm not caught by surprise. I guess I'm like you, Marge, as I felt violated by my surprise office biopsies and surprise internal exams, and that degraded feeling is just the worst for your sense of well-being. But if I can be READY for whatever indignity is coming next, I do a lot better.

I still have that cold and cough, and have to blow my nose so softly or get a nosebleed each time. And, like an idiot, I cracked my toe HARD yesterday when I was carrying up gift wrap from the basement, and now it's black as coal and surely broken, just when my ability to heal is so compromised. ARGH! I didn't even tell my husband, who seems disapproving lately of my "self-care" (he thinks I should stop blowing my nose if it makes it bleed, and should work harder at avoiding contact with sick people, etc.), so I'm letting him assume the limping is just post-chemo aches. At Day 4 after my 2nd chemo round, I expect an achy day, but so far so good. I took an anti-nausea pill this morning for some early quesiness, but it's not too bad. My taste buds are screwed up, and cheese and all dairy products taste sooooo rank. I stand at the refrig and everything looks yukky. I was so tired yesterday that I fell asleep at 3PM and slept an hour and then went to bed at 9 for the night. I didn't get any of my grant work done at all and now am falling seriously behind.

I sound so whiny! I apologize. I FEEL whiny!! We had freezing rain last night and it's a cold, dark and gloomy day here. I plugged in the Christmas tree and that little twinkle is helping raise my spirits. I think I'll pop in a funny DVD and let that be background and try and get through some of this grant work that's piling up. Sorry to dump on you all. Once I shake this cold, my bad attitude will go with it; I promise!

deanna14
Posts: 734
Joined: Oct 2008

You have a right to have an attitude right now. That is why we are here, to vent and support each other. I think that it is acceptable for you to get a little behind, especially on chemo week. You just take good care of yourself!
I was having a very emotional day anyway when I had the internal radiation simulation. I go for my first treatment today and I don't think it will be as bad as the simulation. It is a little degrading due to the position etc. I will email you my experience, but I was having other issues which made it all a little less tolerable. And it is tolerable, once it is done, it is one more thing behind you!
Like I said, I will email you so you can be prepared.

Marge,
Thank you so much for the encouragement, you are so right. It just has to be done. I think I was just not prepared for what they were going to do and having an emotional day. I didn't realize you were going to do chemo and radiation at the same time. I hope you are feeling okay. Hang in there... you are so strong, both of you are.

Hugs!

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pjba11
Posts: 192
Joined: Nov 2008

Marge and Deanna; So sorry that you are going through the internal rads now. It feels very invasive during and a long time after. At least you will soon be done and it will be over!! It does not drag on like the external. I too Deanna would hate to just be newly married and have to share my body with so many proceedures when all one should have/want to do is share your body with the man you love. How long are you hooked up to that nasty gurgle machine? They had 2 machines for me. One I started with and the last 2 sessions they had a brand new machine that made very little noise and went much faster. I hope you two have the newer models. On a brighter note... has anyone done Christmas candy with Almond bark and crushed lemon drops? Maybe food does not sound good to any of you right now (?), but this was one of the candy recipes that I liked when sick. It is also very pretty to put on a fancy plate and give away. So easy yet unique enough to let people know you still have enough energy to do fun stuff. Linda I hope you get some answers on this cold and nose bleed. Do you want me to send you a bottle of Z? My prayers and heart to all of you. Peggy

deanna14
Posts: 734
Joined: Oct 2008

Thank you for your understanding. I think a lot of my emotional reaction on Tuesday was related to that. I feel like I am being violated and to make matters worse, all of the doctors and techs are men. It just feels like no one else should be going there but my husband! BUT, it has to be done and 2 weeks from today, this stage of it will be over. I don't know yet what the machine sounds like, today will be my first actual treatment.
Almond bark and crushed lemon drops sounds fun, would you mind posting the instructions/recipe? I would like to try them, I have been baking and making candy. I think it is very therapeutic in getting my mind off all this STUFF.
Thanks again and take care of you.
Deanna

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pjba11
Posts: 192
Joined: Nov 2008

Well... here I sit crying a river. One of my friends just died. Lung cancer. Her youngest is a 4th grader. She was doing great. Clear scans. Good tests. Lungs just collapsed and she is gone. This is a tough one. At our school concert she hugged me as only survivors can and said we are going to make it!! I am so angry!! Rally for me girls...........we are here to stay.

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lindaprocopio
Posts: 2022
Joined: Oct 2008

I cry with you, dear Peggy. sad sad sad.

I have no words that can take your grief away and these cyber hugs just don't do it for things like this. I send you my love and profound sympathy across the miles and hug you HARD from afar. (((((Peggy)))))

deanna14
Posts: 734
Joined: Oct 2008

Peggy,
I am so sorry for the loss of your friend. I want to validate your feelings of anger, this disease is just so unfair!!! Know that I/we are here to listen during your time of loss and always. I'm with Linda, feel the love and hugs across the miles. You 3 have become very important to me during this difficult time. I will pray for you and your friends loves ones.

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pjba11
Posts: 192
Joined: Nov 2008

Thank you both for your kind words and understanding. Tammy has her service set for 11:00 today. We have had terrible weather. -40 wind chill and 10 inches of new snow. My husband has the snow blower out to do our farms and the roads between. Our office in town is still snowed in. Nasty day. But the sun is shining bright. Our daughter is waiting to slide on the tall snow pile her dad put up for the kids to play on. No school today. Christmas baking is done!! At least we had something fun to do while were had a storm. Hope you are all feeling well and God Bless.

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lindaprocopio
Posts: 2022
Joined: Oct 2008

Doesn't Marge have her blood work today to see if her high liver count came down? She is in my thoughts and prayers today, as is Peggy with the funeral. Everyone has been so absent from here, and although I hope it is because the Christmas rush is on, I worry that each of us is dealing with some private demons and doesn't want to bring down the others. My cough lingers on, but I have no fever and can sleep at night if I take a Muscinex (sp?). I have been a little light-headed and am trying not to drive much as I can tell I am 'off' a little. And I'm battling with Hershey Medical, as they mis-coded my surgery and left me with another uncovered $4,000 bill. I have been emotionally pretty fragile, in a way I don't like, with self-pity creeping in as I miss my grandchildren but they are busy with Christmas activities and, although they are very sweet to me when they see me, I know that they are happier to be running to the mall and going to holiday parties and I totally understand and agree. But the "poor me's" seem to be creeping in a little bit each day. I always have LOVED Christmas, but now I understand why so many people get blue at Christmastime. Anyhooooo, I am mixing up a batch of chocolate chip cookies and plan to dip chocolate covered pretzels this afternoon. That should cheer me up! That, and shaking this damn cough.

Deanna: you look so gorgeous and happy in your photo! I love that 'spot color' effect on black-and-white photography!

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pjba11
Posts: 192
Joined: Nov 2008

Sorry to hear you are not quite as good as you would like to be. We HAVE had a quiet time here on our site. I also emailed all of you last week and did not hear if anyone got that. My email on Yahoo was messed up for a few days so it may have all gone into the junk mail trash cycle. We should somehow come up with a back up plan that if any of us end up in the hosp. etc that someone could come on line and tell us so we could send flowers or cards. (I hope we hear from Marge.) How is your hearing Linda? I noticed with my chemo when I felt a little 'off' it was my hearing. Chemo does have that side effect very often. I also have a left over 'chemo cough'. My lung Dr. says it is now classified as a nuisence (sp) cough. We have had a lot of flu bugs here in Mn. Now with our BRISK weather maybe the air will be debugged a bit. I have to go to SD Monday to see my dad and take him lots of baked things. He will be coming to Mn for Christmas day too. I kept my 1 year old grandson overnight Saturday. He loves the tree. He was so good about not touching the decorations. He would put his little nose right up to them but after we told him no he did not touch them with his hands. I really complimented his mom when I took him home at what a great job she is doing to have him mind us so well. My oldest grandson is 17 and he was supposed to have his concert at school tonight.... no school. I would think they would not have the concert either. Hope to hear how all of you are doing. My thoughts and prayers are with you many times a day.

deanna14
Posts: 734
Joined: Oct 2008

Sorry to be so quiet. I had a really busy weekend and now I am exhausted, but having a relaxing day today.
Peggy, I didn't get an email, so maybe it did get caught up in your junk mail. I've been wanting to ask you if you ever had any shortness of breath with radiation? It mostly comes when I am really tired and it scares the crap out of me. I don't have my next treatment until Wednesday and I guess I will ask the doctor. I don't know, maybe I'm coming down with something. It is soooo scary to develop a new symptom...
I'm happy that you had a good time with your grandson.
Linda, thank you for the compliment on the picture. It sounds like you are feeling pretty good after chemo #2. I sure hope Marge is doing okay, she hasn't posted much lately.
I've got a countertop full of baking goods and need to get busy. Can't seem to find the energy. I will be happy to finish up my radiation next week, maybe I will begin to get some energy back. Then it is on to chemo in February.
You girls take care. You are in my thoughts and prayer. Love and hugs.

deanna14
Posts: 734
Joined: Oct 2008

Marge, are you out there? After reading your post from last week again, do you think that your ankle pain was from the radiation? I've noticed that my feet have been hurting often, just aching a lot, also my legs and hips. I thought maybe the leg and hip discomfort was from the position they have you lay in. I've also had the foot pain in the past, but haven't had it for a long time. Never thought about it possibly being related to radiation. Are you by any chance having any shortness of breath?

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pjba11
Posts: 192
Joined: Nov 2008

Deanna; I like your pictures. It is fun to see the different personalities. I am trying to think of how to answer your question on shortness of breath during radiation. I had a type of 'weakness' when I had internal radiation. Similiar to getting the flu.. maybe. I had a all over weakness, a type of shortness of breath. It would come and go especially when I would stand up suddenly. I was told later that it could have had more to do with my getting 'peanut butter' poisoning. ( I ate a whole jar + of the recalled Jiff while in radiation causing salmanella poisoning.) My radiologist thought I was reacting to the radiation until the news announced the peanut butter recall. I had been so sick that all I was eating was the peanut butter and that was making me worse! Is this shortness of breath something that could be stress realated? When my daughter has any emotional trama she has a lot of trouble breathing. I know what you mean about the new symptom thing. I still have any new unexplained 'twinge' start a mini anxiety attack. Especially when I feel something going on with my lungs where the Drs are doing a 'watchful waiting' on both sides because of 'spots'. I also just had my right arm Xrayed because of shooting pains. My cuff may be tearing. It had a minor tear before on one of my MRI results, but may have repaired itself. I also have osteo going on. Shoveling snow may have aggravated either problem. 2 months ago they had to X ray my foot. Arthritus again. My back was x rayed before that due to radiation changes in my lower spine..... Any of these things should just be expected as I get older, but because of our cancer diagnosis any of these things trigger a lot more awareness than most 'normal' people feel. My doctor is so patient and says it is all to be expected from the aggressive treatments I have been through. She encourages any new pains to be totally investiaged so that the stress levels stay down. We know that we can not rely on my CA125. I appreciate her judgement totally. Hope you get your answers too. Nothing should be overlooked at this stage.

deanna14
Posts: 734
Joined: Oct 2008

I will ask them, but I get so afraid that they will find that the cancer has spread. I don't know if that is rational or not, and I know that if it has we need to know. I guess it could be emotional, but it has only been happening since about the third week of radiation. Which still does not exclude some sort of "panic attack." I feel like I am so paranoid... every little ache, etc. scares me. I feel like a nut! Thanks for listening and understanding.

deanna14
Posts: 734
Joined: Oct 2008

Oops, double post. Sorry!

pjba11's picture
pjba11
Posts: 192
Joined: Nov 2008

You are not supposed to let yourself feel like a 'nut' when you have genuine concerns about your health. Your emotional health is just as important as the rest of you when you have this battle to fight. The unknown has more power than the known. Keep your power where you use it against this battle. My neighbor was just here. Her sister in law who is in her 50's was diagnosed this fall with a lung disorder. The lung did not have cancer, but they did find cancer in her thyroid. They said no problem.. very curable. They then removed a non cancerous tumor from her lung, when she went back to have her lung follow up exam she asked her oncologist 'now that her lung was fine.......... what about the cancer in the thyroid?' Can you beleive her DR. said, "oh, that's right I forgot about that." Now it has spread from her thyroid to her bones and brain. This is the horror story that happens when we do not 'ride' these Drs. It should not be necessary. We are already fighting for our lives, but we need to make the medical profession stay on track. It is too easy to just say 'they will let us know ' ..........even if you are very afraid Deanna you have to have the earliest detection there is to beat this. Stay ahead of it. You know your body / how the changes feel. Challenge and follow up on any changes. Your Doctors are paid very well to take care of you. MAKE THEM DO IT RIGHT!!! They can not do that if you do not tell them what is going on or ask them to tell you what is going on. No question is too small when the worry starts!! Let them take care of you and if they don't ..... make them!!!! Stay tough it will keep you winning this battle. Do it for all of us too!!!!

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

I will email Marge and see how she made out with her blood work today, and if I hear back, I'll email each of you. Deanna, chemo causes a pain very similar to arthritis about the 4th & 5th day after each round, and then it goes away until the same time the next round,...at least for me, so far, after 2 rounds. If radiation also causes that type of pain, I can see why our oncologists aren't trying to do chemo & radiation concurrently. (although I would LOVE to speed up this endless 8 months of treatment, and be done with all the doctoring!!) Maybe they will reconsider doing both simultaneously with Marge if she is suffering too much. Your shortness of breath seems like the same kind of 'scary' as my light-headedness. A few days ago I started getting this tiny tingling that you feel just before you pass out (almost like hyperventilating, but not as dramatic.) I haven't actually blacked out at all or even swooned, but it feels as if I could if I don't sit down. It makes me afraid to drive. But now when I feel that strange weakness, I drink a Boost and that seems to make it stop. I am in my predicted mid-round 'low blood count' week, and I have that cough. But I DO call my oncology nurse with every symptom to get it on my record, and she always has the oncologist call me back to let me know at what point I need to get my butt in there. I haven't had to go in between rounds yet, but it hasn't stopped me from phoning every few days if I am worried about any new symptom. Please don't hestitate to call your oncology nurse. They need to know what's going on. I'll let you know if I succeed in reaching Marge. I may even have her phone number somewhere. What time zone is she in?

shortmarge's picture
shortmarge
Posts: 295
Joined: Nov 2008

I wasn't sure whether the radiation or the chemo was kicking my butt this time. But now I know its both. I woke up this morning feeling really good and went for my last radiation treatment today and I went back to work. Stayed for a couple hours went home and took a long nap. I ache, my arms ache, my legs ache and I am getting frustrated. Trying to wrapped my grandchildrens presents and I just don't have the energy. I gave blood today too but haven't heard anything. But at least the radiation treatment is done!

Hugs to all I'm going back on the couch, hopefully I can stay awake and watch the football game. GO EAGLES!

MIND, BODY AND SOUL WE WILL KICK CANCERS BUTT!!!!!!!!!!!

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

I was worried about you, kiddo. Glad the 'double-whammy' is over for you! You are a strong woman to be able to do those two treatments simultaneously. But your suffering will keep me from pressing my oncologist to start my radiation during my chemo, unless my CA-125 goes back up again. Please let us know when you get your bloodwork back. Tomorrow will be a better day. ((((Marge))))

PS: My husband is a lifelong die-hard Eagles fan, too.

pjba11's picture
pjba11
Posts: 192
Joined: Nov 2008

So glad you have that milestone behind you. Hope your energy levels rise so you can enjoy the presents you did wrap when they unwrap them!! Keep up your spirit you have already come a such a very long way. God bless you.

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