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I'm new here

MageeLo
Posts: 3
Joined: Oct 2010

Hello all. My mom had a staging hysterectomy 3 weeks ago and has been recovering amazingly well - she actually went to a dance this past weekend! Follow-up with the surgeon this morning resulted in the news that she has Stage III-C UPSC. I've spent the last hour and a half doing research, including reading many of your posts. You are an amazing group! I will try to spend the time to read everything, but am in a bit of a tizzy right now, as this diagnosis was a surprise to everyone (which seems fairly common since UPSC is relatively rare), and am trying to educate myself as quickly as possible. The doctor has recommended 6 cycles and chemo, and mentioned possible sandwiching with radiation. I saw a few posts on this, but they were from 2008. Can someone tell me or direct me to a more recent post or other resource that has more updated info on the effectiveness of the two treatments. Also, any of the older ladies with this diagnosis, what would be the best thing a daughter could do for her mom at this moment? What do you wish someone did for you? My mom is one of those strong gals who hates to ask for help, and I want to do all I can to keep her hopeful and as happy as possible. Thanks so much for any guidance you can provide.

BobbieAnn
Posts: 11
Joined: Aug 2010

My mom was diagnosed in August of this year. Surgeon staged at IIIc2 and pathologist staged it at stage IV. Radical hysterectomy (7 nodes positive). Her oncologist recommended 6 treatments of chemo, then possibly radiation therapy. I know some of the ladies here have had the sandwich treatment, some have had the chemo all up front. I supposed it depends on what your oncologist recommends and each person's individual situation. My mom sounds a bit like yours. She is very active and doesn't particularly like to ask for help. She is having her second chemo treatment today. She did not have any nausea or vomiting with the first treatment, just fatigue. She takes dance lessions and walks most every day. I think it is important to encourage exercise and getting back to daily routine which it sounds like she is doing.

This board is great and there are others who are much more knowledgeable than I am. I have learned a lot from these gals and their experiences. They help me to know what to expect and are great at responding to questions that you may have.

Hang in there and keep in touch.

MageeLo
Posts: 3
Joined: Oct 2010

Thanks so much for responding so quickly. It certainly sounds like we are in very similar boats and it really is a comfort to know someone is sailing along the same path, though I would not wish it on anyone. Hope your mom's treatment today went well. We've got appointments with chemo doctor and someone else for next week. Will update when I have more. You hang in there, too :-)

upsofloating's picture
upsofloating
Posts: 473
Joined: Dec 2009

I'm sorry to hear your Mom has to deal with this. Unfortunately the treatment has not changed much in decades and that as you describe is the current standard. Only variations are timing of chemo/radiation which varies somewhat by individual doctors and by individual situation of patients - such as location, extent of tumors, cancer stage and grade. Chemo gets more difficult with subsequent cycles as the body gets more and more pounded by the treatments. There can be delays if the bone marrow is not able to bounce back to get subsequent cycles on schedule. Sometimes other meds are given to boost the marrow - again it's quite individual. Keeping as active as possible is always a good plan - a stronger body just manages all this better.
I've always been a rather independent sort and rarely ask for help. But always putting up a strong front sometimes covers for wishing everyone would just go away and let me have my own space to languish and recover. My son though would often just say "let's get and go for a ride' and take me to some delightful spot that would be so energizing and uplifting. And anyone who just took care of chores without my asking was much appreciated. I hate being helpless - even when I really need help, lol. I hope all goes fairly smoothly for your Mom. She sounds like a very strong lady. --Annie

MageeLo
Posts: 3
Joined: Oct 2010

Thanks for your note, Annie. My mom and I are in different states and I'm feeling pretty useless at the moment, but I was with her for surgery and plan to go for meeting with chemo doctor as well. When I get up there, I will take over chores and keep in mind your idea about just going for a ride - I guess the simple things are often the best :-) Thank you again for your support and quick response. I am feeling much better about all this than I was this morning. Many, many thanks. Lorraine

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

Of all the many kindnesses that family and friends bestowed on me, I know I appreciated when people came and CLEANED for me while I was getting my chemo more than anything. Your immunity gets so compromised after you get a few chemos in you, and so you NEED a clean house for health reasons. And yet you get so fatigued that cleaning is never as appealing as a nap. If it is within your financial means, a cleaning service a couple times a month would be the one thing I would do if someone I loved was getting chemo. (I pay personally to have someone come in and clean my house twice a month and consider it money well spent for my health.)

The treatment for UPSC hasn't changed since our 2008 posts and that long thread is still probably your best guide to the issues that will come up. One new development is that some oncologists 'fractionate' the chemo drugs and give a smaller dose every week instead of the larger dose every 3 weeks. This allows a denser dose and is often easier on the patient. You may want to ask about that as an option.

There is a SEARCH feature to this Discussion Board that may help you get faster answers to direct questions that occur to you, or simply post and ask. PLEASE DO NOT READ ANY STATISTICS OR SURVIVAL RATES or anything older than the past year or 2, as they are irrelevant to today's patient and scary as heck! (((((Lorrane))))).

TiggersDoBounce's picture
TiggersDoBounce
Posts: 413
Joined: Oct 2009

Sending your Mom positive and healing thoughts....

We are all here to support you both...

Keep us posted on her progress.

Laurie

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

I am sorry to hear about your Mom. I know as a daughter it must be hard for you. I am 62 years old and have Stage III-C UPSC. I had the sandwich treatment and completed the treatments in 8/09. I agree with Linda that you don't want to search the internet for UPSC. What you find is very depressing. When I was diagnosed I searched the internet, and was very depressed over what I found. The statistics they give are very scary. My daughter found this site for me, and it is much more uplifting. What these ladies are going through now is the current treatments. I admire the courage of those sisters on this site.

My daughter made a care package for me before my first chemo. She must have gone on line to see what possible side effects the drugs could have. She gave me unscented lotions, as sometimes smells bother people. She also had hand santitizer, and wipes, special toothpaste, mouthwash, saline nasal spray, baby oil (for the scalp for when the hair falls out), bottles of ensure (in case I could not eat,)magazines to read during chemo, puzzles books, ginger pills (for nausea) and peppermint oil (also for nausea). She offered to sit with me during chemo, but my husband went to all the treatments with me. I know she felt helpless, and this was the way she could do something.

I know it will be difficult for you, being in another state. Some friends sent cards every week, while I was in treatment, and those meant a lot. Feel free to ask any questions you may have. Using the search engine on this site will be helpful for you, too.
Good luck and know that we are all here for you. In peace and caring.

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