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Uterine Papillary Serous Carcinoma (UPSC) -- new member of the sisterhood

Always Hopeful
Posts: 234
Joined: May 2010

After much cumbersome searching, I finally found Linda Procopio's discussion created on 10/26/2008, "Uterine Papillary Serous Carcinoma (UPSC): any others here???". There is so much valuable info on this extensive board (435 replies as of this writing)but I did find it quite cumbersome to navigate through and post. Based on Ro's suggestion, I decided to start a new discussion thread by cutting and pasting content from my two previous postings located on the last page of the above mentioned thread. Time will tell if this makes things any easier for new members.
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Suggestion: When cutting/copying and pasting from different boards, do not try to do it on the discussion boards. When you switch back and forth, you lose anything already pasted. I wound up cutting and pasting first into a Word Document and then copying and pasting what you see below from that document.

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From my first posting on the board mentioned above: May 11, 2010 - 10:05pm
Newly diagnosed

Due to spotting on Feb. 28, 2010, I had an endometrial biopsy on March 1 and was diagnosed with cancer on March 4th. I, too, have the rare and aggressive form of uterine cancer... uterine papillary serous carcinoma. The pathology reports started off wonderfully...no other gyn organs were involved NOR were my lymph nodes affected. Great news! Here comes the however...two "dots" were found ON my colon during the surgery...they were uterine cells. My gyn-oncologist refers to these cells as "goofy" cells that do not follow any of the uterine cancer cell rules. So, they are treated aggressively and as if they were ovarian cancer. I have followed my medical oncologist recommendation of an 18 week, 6 cycle regimin of carboplatin (every 3weeks) and taxol (every week). After this I will also require internal radiation. I started chemo 2 weeks on (4/28) and luckily have experienced few side effects. Tomorrow is Week 3 of Cycle 1...Taxol.

I would appreciate being directed to the most current board, if this is not it, since I have already gathered so much information from all of the postings I've more haphazardly located. Thanks.

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From the second posting in after Ro’s response May 13, 2010 - 7:44am

Thanks for your response, Ro.
You are so right about this being a long posting. I have listed it as a favorite and then find that clicking to the last page is the most expedient way of reading new entries. Thanks for you suggestions, too.
Yesterday (Wednesday, 5/5/10), I completed the first cycle of my six cycles of chemo. My white blood count was just below the normal level but my medical oncologist OK'd the Taxol treatment. I am, though, scheduled for another blood test on Monday, after which a decision will be made about how to proceed. As the nurse explained to be, I am not a candidate for Neulasta since it is slower acting over 14 days and is prescribed for those on the 3 week regimin since you need to be off treatment for the 14 days. Neupogen might be a possibility. The chemo nurse felt that the carboplatin was more of the reason for the dropped count than the taxol. I will know more after Monday, I guess.
The decision to go with the taxol every three weeks was my choice based on the recommendation of the medical oncologist. She explained the more traditional protocol of every three weeks but then stated that current research has led to the protocol that I agreed to...more effective, less side effects. At first I thought it was the regular dose divided by 3 and administered over each week. What I did find out was that more of the Taxol is being given each week than just 1/3. Thankfully, other than flushing on the second day from the Decotron which by the way makes me eat like a beast, I still have not experienced any terrible side effects. My premeds must be controlling that.
Pre meds: each week -- decodron, pecid, benedryl (all IV)
In addition: Carbo week -- Emend (one pill administered pre chemo, one pill taken each day for the next two days. (Emend is taken during Taxol only week.)
Taxol week -- Reglan (IV), pills to take at home, every six hours as needed. Only took one after the first week.
As far as my stagine goes, my gyn-oncologist, as well as the medical oncologist, have explained the difficulty in staging this. I need to verify this again. The gyn-onc refers to the serous cells as being "goofy" cells that do not play by any of the rules of usual uterine cancer cells. Even though none of my other gyn organs were involved, nor were my lymph nodes or channels, since the cells were found on my colon, an aggressive approach needs to be taken. As she said, "Other cells might be floating around and we do not want them to find a home." My feelings, "If they were there, they could be elsewhere...therefore, let's get them, if they are there."
Radiation will follow the chemo. The gyn-oncologist believes in dealing with one thing at a time so we have not gone into great detail about this. Initially I was somewhat taken aback by this but have come to realize that it takes so much energy to absorb and understand things that are happening now. However, she is forthcoming with any questions I do have. “One step at a time”, though has been and continues to be her mantra. For the most part, I do agree.
One of the major issues I am now dealing with involves my job. As a NYC middle school teacher, I have almost enough sick days accumulated to get me through the rest of this school year. I am also blessed with dear friends who are willing and able (according to the guidelines) to donate some of their days to make up the difference. My chemo treatments, if everything goes according to schedule, will end the end of August, to be followed by internal radiation. I have begun to explore the possiblities that exist for me for the next school year and am toying with applying for a Restoration of Health Sabbatical at 60% pay. This will enable me to stay on payroll with my current benefits. Although I believe in always being hopeful, the reality is that only time will tell when that hopeful wish has been realized. I don't really know much about the radiation's effect or, for that matter, how I will tolerate the rest of the chemo. Some have mentioned Social Security Disability to me but from what I have researched, I don't think I fit the criteria, nor am I sure it is best for me at this time. I would appreciate hearing from anyone who might have investigated this further.
Well, Ro, this has become a rather long posting. I might, as you suggested, cut and paste it into a new discussion thread.
Thank you so much for responding to my posting. I wish you continued health and peace...JJ

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I thank you all for sharing your knowledge and experience throughout the discussion boards. I truly do believe that being an active member of our own treatment plan is the ONLY way to deal with this. We can all extend our knowledge base by communicating with others in our general situation.

With my best wishes for continued health and peace,
JJ

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

Ah, JJ, your story is sadly so familar to so many of us. I am glad you found us and this Discussion Board, as so much on the web on UPSC is outdated and darn-right terrifying. Here we post NEW research when we find it, and you can compare 'real-world' treatments / side affects, etc. that other women are experiencing with your same cancer, women from around the world. That long long post was originally all we had for UPSC, housed as a thread here under 'Gynelogical Cancers Other than Ovarian.' When that single thread got so crazy-long, CSN gave 'Uterine Cancer' its own Discussion Board. The best thing about that long long thread is that it jumps to Page 1 on a Google Search and allows women with UPSC searching for information to find us here. And if you are ever up at night, sleepless from steroids or anxiety, you can spend hours reading it from start to finish like a book written especially for you.

I took the weekly dense-dose taxol, and never had any side effects other than baldness and fatigue. I did get Nuepogen shots for 3 days after each infusion to keep my white counts up, but this was my 2nd ordeal with chemo. (I had the 6 carbo/taxols and the pelvic and brachy radiation after my hysterectomy, and when a recurrence was suspected, imeediately went on the weekly taxol. I am currently in remission, with a CT/PET scheduled for this Monday that determine whether I will be back in chemo soon or not.) You can read our various cancer-journey stories by clicking on that symbol by our names, if you're curious.

I worked throughout my treatments, but am able to work from home and on a flexible schedule so my experience may not be comparable. How much lead time must you give them for the sabbatical? The internal radiation isn't nearly as hard on your body as chemo; I believe I could have gone to a job any day except actual treatment day. You may want to SAVE that sabbatical for later on when you may need it. When your oncologist is ready to start talking about the brachytherapy, please do use the 'Search' feature here to learn of the various kinds, as there have been advances in brachy equipment that are worth travelling to get if they don't have them at your clinic/hospital. Or just ask here when you are ready.

My oncologist calls UPSC a 'bad character', and that it is. Staging doesn't matter as much with UPSC treatments: even Stage 1 cancers that are Grade 3 (like UPSC & clear cell) get the carbo/taxol and brachytherapy radiation. You are doing the chemo and schedule I would want to get if I were in your shoes. (((((hugs)))).

Please don't dispair. We've had 5 and 7 year UPSC survivors post here who never had a recurrence after their initial treatment protocol.

Always Hopeful
Posts: 234
Joined: May 2010

I was almost finished with my response when I lost all of what I was typing. I have to leave now, though. I will write it again later on tonight. I think from now on I'm going to write all of my responses first in a Word document and then copy and paste it into the discussion board. This is just crazy!!!

"Talk" to you later, Linda.

maggie_wilson's picture
maggie_wilson
Posts: 616
Joined: Nov 2009

i've been posting for several months now, but don't think i've said that i have upsc, stage 4, and have had a radical hysterectomy, that went very well insofar as surgeon said he got all the disease he could see with the naked eye, and i survived the surgery in better shape than had been anticipated. although the cancer had spread to half the nodes removed, no vital organs had to be removed, though plenty debulking. 10 weeks later i had the standard 18 weeks of chemo : carboplatin and taxol with nupeogen shots after each infusion, six in toto.

because there was so much controversy and contradictions amongst 4 doctors--radiologists, my surgeon, my chemo doctor and the tumor board about the efficacy of radiation for me, with the tumor board saying none and convincing my chemo doctor, i decided not to do any radiation, and i'm glad. my surgeon, normally very aggressive, had recommended only the brachey radiation because he believed more radiation for me would be too toxic (i'm 68), but apparently, the tumor board thought because i did not have cancer in my vagina, that i should not have radiation at all. so, right now, 6 months post chemo, i'm awaiting scheduling for my first post treatment cat/pet scan. apparently my insurance is balking at the pet scan at this point, so it's being reviewed. i've never had a cat scan with contrast, so that could be enough to see what's going on, and apparently, if more information is needed after the ct scan, the pet scan most likely will be approved.

of course i'm anxious about the cat scan, and kinda believe i either have a recurrence, or more likely, that not all the cancer cells were gotten in the surgery and by the chemo in the first place, so strictly speaking it wouldn't be a recurrence so much as a continuation of the original cancer. i've asked women here about roving pains, etc., and i have some pains that are staying, so don't know what to really think about it. i'm actually still on some pain meds from the surgery, but now cut in half, and every 6 hours, rather than whole pills every 4 hours. so, there's improvement there. still have some indigestion, and vague nausea at times which is what i was originally feeling prior to diagnosis, much less now, but there nonetheless.

if the scan does show cancer i'm honestly not sure what i'll do next. i'm seeing an acupuncturist now and have throughout treatment, and want to try more alternative methods before i go back to a chemo, if that's going to be possible. i do want to try alternative diets, more herbs and supplements, and am doing more reading, etc. now, and have gotten much more serious about diet and exercise. am now walking for at least a half hour a day, every day, which feels good, and eliminating sugar, white flour, red meat, etc. and eating more vegetables and fruits. i do have a decaf latte every day sweetened with agave nector.

i do sometimes experience shortness of breath, and am wondering if anyone else does as well. i try to stay hopeful, have worked part time (as a psychotherapist) through chemo, and full time since february, which feels great. so, i'm waiting for a ct scan date, and obviously should know a lot more when the results are in. i dread the ct scan, and at the same time can't wait to get it over with already. i have read some posts from upsc survivors who have lived 5 years and more after treatment, as well as know of stage 4 ovarian cancer survivors who are living 10 years and 2 years respectively thus far post treatment, as well as one of my health provider's mother, who lived 11 years after being pronounced terminally ill with ovarian cancer. so good, unexpected things can happen too.

my best to you all. i so appreciate everyone's comforting, informative, heart felt posts.

sisterhood,
maggie

Songflower's picture
Songflower
Posts: 631
Joined: Apr 2009

Welcome to the board. I am glad you went to the first communion. It is tough avoiding crowds; I remember when I had breast cancer during a bad winter flu season and they wouldn't let me go see my daughter in the high school play. It was hard; but someone taped it for me and that was a gift.

I've read everyone's posts and they have given you excellent advice. They are wonderful, smart, tough women and while none of us want to be a part of this group one quickly learns how great this group of women is.

I wish I could give more advice about the germ thing. I am on neulasta this time and don't worry quite as much about low white counts. I do avoid crowds but as time goes on I am not as afraid as I use to be. I think during flu season it wise to make a few changes. I don't go to Church often as was told that is a place that often is full of coughing people. So I make changes and go to services that are sparcely populated. I've decided you have to live too!

You're in my nightly prayer list!

Doam

Always Hopeful
Posts: 234
Joined: May 2010

Dear Doam,

I am so amazed at the compassion and guidance that you, and so many others, have offered. Who would believe that perfect strangers provide such support? It is truly such a beautiful experience.

This past Monday, I went to have my blood checked between my treatments. The numbers did improve so my chemo onc didn't feel Neulasta was necessary but stated that is always something we can and will do if necessary. Could you perhaps fill me in on your experiences with it? How often do you have to have it...do you self inject...did you experience side effects?????? Any info would be much appreciated.

Prayers are coming your way, too.

Peace and hope,

JJ

jazzy1's picture
jazzy1
Posts: 1385
Joined: Mar 2010

Hi JJ,

I had chemo for 3 rounds and then 33 sessions of radiation. When I visited by chemo oncologist he mentioned after the last 3 chemo sessions lets give me a neulasta shot. He looked at my numbers after 3 chemo and my white count was a bit low and knew I didn't want to stop with chemo due to low counts. Therefor, I had the shot the day after my chemo session which built up my immune system. The shot made me oh so tired and my bones ached. Very weird sensation is all I can say now. Well worth it as I never had to post-pone a chemo round. No you do not self inject, the RNs will do that at their office.

I will tell you once you start the shot, apparently it must be administered after the remaining chemo sessions. Don't ask why, I just do what the doc tells me. ALso, most insurance co's do not pay for this shot, therefore have the pre-qualify you before the shot. Cost is approx $8000. Luckily Anthem covered 100% of mine...wow!!

Hang in there!
Jan

Always Hopeful
Posts: 234
Joined: May 2010

Hi Jan,
Thanks for the neulasta info. I can't believe the cost! I guess the bone aches are because of the bone marrow being prodded to produce more. Did these symptoms last for many days?

I do wonder if my insurance will pay for this, if necessary. The pharmaceutical companies are really unbelievable! Are they trying to recoup all the research and development costs that were expended in order to market the product? $8000 per shot?????????????????

Peace and hope,

JJ

kkstef's picture
kkstef
Posts: 706
Joined: May 2008

I had neulasta 24 hours after treatment 3, 4 and 5. I also had a transfusion of 2 packed cells and was unable to get my counts up to the "safe stage" so my chemo was discontinued after 5 treatments. I had very little bone pain. I went to a hospital out patient dept and the nurse gave my injection...in the tummy. It really did not hurt and I had some shooting bone pains for a day or two...but not bad. The nurse told me to take Tylenol if .
I needed it.

Medicare did cover the injections and my tie-in paid my share of the 20%, thank goodness. Yes, one wonders how drug companies justify such a price tag!

Best wishes to you!

Karen

Always Hopeful
Posts: 234
Joined: May 2010

Thanks so much, Linda for the response. You are so right about the discussion board being the best source of information on the web. As I started to read page one of the thread you began in 2008, and I only got through 3/4s of page one in four hours, I learned so much! Strangely so, up until this afternoon I had no evidence of hair loss, yet that is what all of you were beginning to experience in these entries. Well, by about 3 this afternoon, I was sitting outside reading and felt a tickling on my face. Strands of hair were falling out. I ran my fingers through my hair and, yup, there were more strands. Weird, huh…do you think it was the power of suggestion taking hold as I read about your hair loss experiences from 2008! I guess some things are predictable when it comes to this…the price that’s paid for wellness!!! Just as you wrote, it almost like a book written just for me!

I’m sorry to hear that you had additional Taxol treatments. I guess I haven’t yet gotten up to the reason for that in the postings. My goal is to finish reading the three pages by the end of the weekend. I will then have caught up on all of yours and the others experiences, as I acquire more and more knowledge, thanks to all of my new found sisters. My prayers are with you…be hopeful and positive about the cat/pet scan showing that you are still in remission.

That brings up one area of confusion for me. My medical oncologist has stated that a pet scans are not meaningful for this situation, cat scans yes but not the pet. She even stated that insurance companies would not pay for the Pet scan either. I’m wondering if it has to do with the fact that I had no lymph node involvement. I think I’m going to ask her to explain this again.

Now about the sabbatical…as of today, my plan is to go back to school in September, provided my chemo is finished as planned by the end of August, and see how it goes. Teaching middle school is a very trying situation and the kids are just not the same anymore. I also have to walk up and down five double flights of steps more than three times a day, travel from class assignment to class assignment (the teachers travel, not the kids) lugging my belongins and deal with very unmotivated students. I am 61 years old and have learned a lesson from this diagnosis…life is short, enjoy it when you can, stress less! Anyway, I was “talking” about retiring at the end of the 2010/2011 school year, collect my pension, reduced social security and maybe substitute teach two days a week to supplement my income. Well that was “talk”, now I think it’s becoming a real desire. Getting back to the sabbatical, if it is too problematic and I am still under treatment then I can apply for an emergency restoration of health sabbatical at any time, thereby providing me with more thinking and rest time. There is also word of a buyout for senior teachers (our union is pushing for this because of the severe budget cuts in NYS) which might be something I could take advantage of, if it, of course, presents itself. Somehow this experience has made me reevaluate my life and what I want out of it.

I appreciate hearing that the regimen I am following is what you would want if you were in my shoes. I didn’t really think twice about the weekly taxol choice when presented as being more effective, but it’s good to hear it from someone who has experienced treatments first hand.

My prayers are with you and I will be thinking of you on Monday.

With my best wishes for peace and wellness, JJ

Always Hopeful
Posts: 234
Joined: May 2010

What a wierd sensation. It feels like my scalp is a mini air popper. I can actually feel the strands of hair being "popped" out. Quite tired today too.

I'm in quite a quandry. My white count is low, I've been told to stay away from crowds, my next blood test is not until Monday and my granddaughter is receiving her first communion tomorrow. The church is at 1pm. I'm hoping their church has a "quiet room" that I can sit in, provided there aren't other people in it because of active kids. Then back to their house until the party at 7pm. How do I avoid the "crowds" then? My granddaugher, Alexa, just asked me on Mothers'Day, "You're coming to my communion, right, Grandma?" When I said, "Of course", she looked at me with such relief. She then asked, "To the party, too?" I told her I certainly planned to and then added, "But Alexa, if I snuck out, you probably wouldn't even notice with all those other people there." Well, the next look was not of relief but rather one that said, "How could you even think that?"

This week has been an especially difficult one because my daughter and her husband announced on Sunday that they were pregnant with their first baby and then sadly miscarried on Wednesday. And I'm feeling sorry for myself 'cause my hair is falling out. Laura is a special needs early childhood teacher and well knows how important a healthy pregnancy is. Because of this she can intellectualize and tell herself that there was a reason for this, most likely some chromosomal problem and that nature and God blessed her. Emotionally, though, she was just so thrilled, not only for themselves, but for me so that I had something beautiful to look forward to. We will get through this and support them through this difficult time, looking forward to the near future when she can announce again that they are pregnant.

I guess I've used this forum as a reflection journal today...didn't really mean to, it just kind of happened.

Peace and Hope, JJ

kkstef's picture
kkstef
Posts: 706
Joined: May 2008

I am so glad that you felt comfortable using this forum for your reflections. I am so sorry to hear about your daughter's loss and she is lucky to have your support at this difficult time.

I see no reason why you can't attend your Grand daughter's first communion. Hopefully you can sit apart from the crowd and avoid dirty hands and coughs! If you slip out of the church before everyone else that might help. I know some gals who have worn a mask (like they have for allergies) when they are in crowds. I would think just exercising some caution would be enough. At the party you can make an appearance, avoid hugging with other attendee's....and maybe you could slip early to "rest". Your grand daughter could understand that.

When my count got really low they told me to avoid large crowds, like malls, concerts, etc., avoid anyone with colds/flu, and not eat at buffet lines (which I never do any how!). Don't eat samples of food at grocery stores or markets, etc...

There has to be a happy medium and I think one has to look at what is important to YOU! If attending your Grand daughter's First Communion is a priority, then go for it!

Best to you! Karen

Always Hopeful
Posts: 234
Joined: May 2010

Your kind words and logical reasoning is just what I needed to hear. You are right, her 1st Communion is a priority and I will do what I need to do to be there. In anticipation of going, I already told many family members that it's best to stay at arm's length...no hugging and definitely no hello kisses. Hearing this from someone who has gone through it, certainly helps make the decision easier.

I thank you so much, Karen.

Peace and Hope, JJ

kkstef's picture
kkstef
Posts: 706
Joined: May 2008

I am so happy that you will be there for your Grand-daughter's First Communion....it means so much for BOTH of you!! Cheers! Karen

Always Hopeful
Posts: 234
Joined: May 2010

My granddaughter just called me to tell me to have a good night and that she'll see me tomorrow. You, once again, are right, it means so much for both of us.

Thank you again,Karen.

Peace and hope, JJ

jazzy1's picture
jazzy1
Posts: 1385
Joined: Mar 2010

From what I've learned, most insurance companies will recognize and approve CAT-scans but not PET. Now if the CAT is done and still notice something, as in my case, the next level of test is MRI, which I had approved to pay by my insurance. Seems like we have to go in steps before we can have all the scans paid.

Sorry you're loosing your hair. Oh it's such a shock to have you hands full of hair and all of the house. I was there too. I took control and after feeling like a shedding dog for days, I made appt with my beautician and had my hair cut 1/2 inch all over. Then I started with scarves and purchased a wig. Looking back, it was just part of the process and couldn't stop the falling out of hair. Just learned to be accepting.

I hope your daughter holds up fine after the miscarriage. Yes I agree it might be Gods way of saying something was wrong so abort. I had a miscarriage 2 years after my first child. Never had anymore, so who knows?

Germs? Well all you can do is just wash your hands a lot and stay away from sneezy people. Not like you can partake of the family event and hide out in a closet. I just didn't go shopping and around a lots of people as often. Thinking the most important time to avoid crowds is approx up to 10 days after treatment.

Best of luck!
Jan

Always Hopeful
Posts: 234
Joined: May 2010

Well, both you and Karen, have helped me rest easier with the decision I know must be made...I want to be there and I will take as many precautions as I can. Thank you so much.

The hair thing is something that does just have to be accepted. When I woke up in the middle of the night, I actually put on my wig to start getting used to it. If there there is more than thinning my tomorrow, I guess it will be best to wear it to the Communion. I had it cut and styled so it looks pretty close to my hair. Time will tell. I think I'll be paying a visit to the haircutter early next week, too, since a breeze going through my hair is a bit uncomfortable, somewhat sensitive.

I spoke to my daughter a bit ago. Thankfully she is a strong young woman who has, since her wedding almost three years ago, weathered many problems. Her husband got injured on his job a few weeks before the wedding and was out of work for a year, they closed on a home a month before the wedding and almost lost it because of their drop in income, she required back surgery a year after she was married and her husband just had knee surgery and may still require back surgery because of his injury. Tough happenings but they have done their best to bounce back knowing that there are far worse things that people experience. My hope is that this brings them even closer in their relationship so that they soon will experience parenthood.

The insurance companies do put us through the wringer, don't they. I've already experienced their denials, to be overturned when the doctors have appealed to higher offices. I guess that's all part of the process too. Who needs the aggravation, though.

Again, I thank you for your kind words and advise. They are much appreciated.

Peace and hope, JJ

Ro10's picture
Ro10
Posts: 1579
Joined: Jan 2009

Glad you have decided to go the first communion. It will mean so much to both you and your granddaughter.

Sorry to hear about your daughter's miscarriage. It sounds like she and your son in law have quite a rough start to their lives together. I hope that things are brighter for them soon.

Sorry about the discomfort with your hair. I wore a hat and every couple of hours would comb my hair, until all of my hair came out. Many others did either shave their head or cut it very short to avoid all the falling hair. I hope you get comfortable with your wig.

It is a shame insurance companies can cause such aggravation. One certainly does not need any extra aggravation while dealing with cancer. Luckily I have not experienced difficulties with my insurance company. I have a high deductible $10K, so that is my only problem. Last year we had the deductible met in mid February, but luckily this year we will not meet the deductible until I have my next lab test in June.

Hope you blood counts improve. Take time to rest and take care of yourself. In peace and caring.

Always Hopeful
Posts: 234
Joined: May 2010

I just spoke to my granddaugher. She sounds so excited and is happy to hear she will definitely be seeing me soon. Thanks to all of you, my decision to attend was an easier one, one that I knew I had to make.

Time to get ready...hope the hair thinning is not that noticable after I "do" my hair...if not, the wig is ready to go.

Peace and hope to you all,

JJ

deanna14
Posts: 743
Joined: Oct 2008

Hi... I was diagnosed in September 2008 with UPSC Stage IIIC. I just wanted to add that I applied for social security disability when I used up all of my sick leave. I received my first check about 3 weeks after applying. I also received a medical retirement from my job. Just wanted to let you know that ss disability is probably an option for you.
Hope this finds you feeling well under the circumstances.

Stay strong!
God Bless!

Always Hopeful
Posts: 234
Joined: May 2010

Dear Deanna,

Thank you so much for sharing your SSDisability info. That is, then, a viable option for me. The Social Security Disability runs concurrent with any retirement income you receive, correct?

On the up side, the communion was wonderful! I kept everyone at arms length, had my antibacterial hand cleaner with me, enjoyed my beautiful granddaughter, as well as my 5 year old grandson. I was also happy that my hair cooperated so that I didn't have to wear the wig. By Sunday, though, I cut it very short so that the falling strands were not as long. Again, it's the price paid for wellness!

I'm so glad I scrolled down this morning and saw your response. Thank you again.

Peace and Hope,

JJ

Peace and Hope,

JJ

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

Welcome to the UPSC sisterhood to both of you.

JJ, I'm also glad you enjoyed the communion. Sounds like you handled it fine. Re: the bald head - I decided to shave mine off and enjoy the freedom of it all - went to work and everywhere bald and it was fine. Shaved me head weekly to get the peach fuzz off. Remember eye makeup and big earrings!!

Maggie, Re: PET scan. My doc prefers them to CT - maybe each practice is different. But I think they (PET) expose us less to Xrays. Anyway, if you make a big stink with you insurance and can get the doc to do a peer to peer review you may get it approved like mine did recently. Also, I beleive medicare pays for PET scans without much problem - check out since you are of medicare age.

Blessings to you. Mary ann

maggie_wilson's picture
maggie_wilson
Posts: 616
Joined: Nov 2009

i will certainly make a stink if i need a pet scan this time to augment my ct scan and i think so will my doctor. at this point, i think she believes i don't need one yet. still, i'd much prefer less radiation. i have my blue shield policy on my partner's health policy, and don't have medicare, though you're right, i'm entitled to it. i decided not to go for it because i thought it would just confuse things since everything was going so well with blue shield, up to now. i may well look into it, however, if i need a pet scan and blue shield continues to deny it.

sisterhood,
maggie

Always Hopeful
Posts: 234
Joined: May 2010

Mary ann,

So the trick to female baldness is all in the eye makeup and big earring! I love it! Did you wear sunblock on your head? I would imagine one would have to. I do think shaving it off is probably better than buzzing it. I'm just about at that point. I just can't stand the falling strands anymore.

Thanks for your encouragement.

Peace and hope,

JJ

norma2's picture
norma2
Posts: 486
Joined: Aug 2009

JJ I found that when folks stared at my baldness I just gave them a big smile!! Baseball caps worked better for me. The low profile ones are a permanent part of my wardrobe right now. I have them in every color. Since my hair is a little longer a whole 1" LOL(tried to take a pic and put it in my profile but, am horribly inept at computer things, will have to wait till my teenager gets home.) I have been venturing out without the caps. It is all in how you look at it, honey. Ya gotta love a bald woman with a smile. {{{hugs}}}

Always Hopeful
Posts: 234
Joined: May 2010

Norma,

You go, Girl! I love your long hair and LOL at your closing sentence.

I, too, have started a cap collection. Although I have the wig, I just not wanting to wear it...not yet, anyway. I do love your "big smile" response.

Today's accumulated baldness recommendations: eye makeup...big earrings...and a BIG smile! You have to love it!!!

Peace and hope,

JJ

Always Hopeful
Posts: 234
Joined: May 2010

Norma,

You go, Girl! I love your long hair and LOL at your closing sentence.

I, too, have started a cap collection. Although I have the wig, I just not wanting to wear it...not yet, anyway. I do love your "big smile" response.

Today's accumulated baldness recommendations: eye makeup...big earrings...and a BIG smile! You have to love it!!!

Peace and hope,

JJ

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

I did not use this since I had my chemo in the winter/spring months (in FL). But I think it would be advisable or hats in summer.

Good luck!!

Always Hopeful
Posts: 234
Joined: May 2010

Mary ann,

I just clicked to your profile page. So many of your responses on your page seem to mirror my own experiences. How wonderful to be able to redefine the way we live because of our diagnoses...another good thing that can come from something not so good.

Peace and hope,

JJ

DaughterNo1's picture
DaughterNo1
Posts: 14
Joined: Apr 2009

I have posted my 77 year old mother's story previously. She was diagnosed 2 years ago with Stage 4 uterine cancer (we found out later it was UPSC). She had a liver tumor removed in 2008, then a quadruple heart bypass in 2009 (phew!). Her PETS were clear until April 2010 when a small 8 mm spot lit up on her left lung. Spot was removed last week - yes, it was the original uterine cancer but they got all of it. We don't think she will need more chemo or radiation.

My question is this: Has anyone else had UPSC that metasticized to the lung or beyond? Mom's oncologist told us last year that UPSC isn't the type of cancer that "travels". She is doing really well but now we are worried about where the next spot will show up.

By the way, my mom gets PET scans every 3 to 6 months with no grief from her insurance (AARP and Blue Cross) Her doc at Cedars Sinai in LA enrolled her in a program where she gives permission for her results to be released to various studies. This information should help future patients get approval for PET scans.

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