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Darn Labs..it's MMMT

dshapiro's picture
dshapiro
Posts: 28
Joined: Nov 2014

Hello All. 

I was just diagnosed with MMMT plus another stupid but less aggressive uterine cancer from my November 6th hysterectomy due to bleeding and other crappy stuff.   My delightfully cute gynocological oncologist is setting up my chemo treatment as I type this and will find out what that is all about on my Dec 4th appoinment.  But, I would imagine it will be pretty similar to what has been discribed in this forum. 

I am 61 years old and will turn 62 in early Feb and at stage 1a.  Having bouts of major depression right now but also trying to hold off total mental collapse until I see Dr. Cutie again.  I have a pretty odd perspecitve on things as I am also a paranormal investigator and have been over the last 20-years.  But, it appears that I need to start looking to the living for my support and how best to handle the mental aspect to this disease.  So, here I am. Introducing myself to you all and hope to have many years of being helped and helping others on this road. 

Debbie Shapiro

 

 

txtrisha55's picture
txtrisha55
Posts: 684
Joined: Apr 2011

Welcome.  I too have the mmmt cancer. 3 years no evidence od disease or NED.  I was stage 3c1. That one lymph node did me in. So far so good. Interesting job you have. Stage 1 is good. Stay of the regular internet as much of it is outdated information. Remember you are your own advocate and a static of one. Each person  is different as is each persons treatment and their reaction to treatment. There is a lot of information and advice on this site and I am zure lots more will chime in soon. Trish

dshapiro's picture
dshapiro
Posts: 28
Joined: Nov 2014

Thank you, txtrisha for your welcome and so good hear you are doing so well.  Does give one hope as do many others on this site.  I've been gleening so much information and you are correct, everyone is different, as is their individual reaction to treatments.  I think I may be lucky entering this whole thing at stage 1a but it is obvioulsy going to be one of those things I'll have to deal with daily for the remainder of my life.  

I will be looking into ways to control the chemo effects to my body but this site has offered some excellent information I can go over with my Doc on Dec 4th. 

Thank you for being here and for you tremendous help. 

Debbie

 

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2582
Joined: Mar 2013

Debbie, I am sorry you have had to find this forum but Trish is right, you will find a lot of information here and may want to try to do a search to find some of the previous information.  This is a great place to ask questions, laugh, cry, vent....

I had no idea what to expect from anything and didn't find this site until late in my treatment.  It is pretty much the only place I would tell someone to go for support. 

There are a great bunch of women here - and on all the gynecological cancer boards.  

dshapiro's picture
dshapiro
Posts: 28
Joined: Nov 2014

Thanks, NoTimeForCancer and yes, I too am sorry to meet people here on this forum but thank God you are all here to help us newbies. I know I will gain much needed strength and support here which will hopefully make things a bit less scarey for me and my family and I truly do hope I will become one of the long time discussion board memebers who can help others as time goes on. 

Debbie

KayBB
Posts: 15
Joined: Nov 2014

Hey Debbie,  Just had my hyterectomy on Oct 27th.  I had three lymph nodes removed, two with MMMT cells and a growth on the other.  I have stage 3a I am 62 and mentally a wreck in the beginning.    I have to stay into the day.  I am a very spiritual person.  I read and meditate.  When I came on the web site I was told not to research and they are correct.  Stay positive and I have to stay busy.  I have a great support group of women that when I need to vent, I vent as you may do on this web site.  You are not alone, we can fight this together and I choice today to fight, live, love and be happy.  Hope you can find peace during this difficult time.  I had fear about the treatments but I have had one round of chemo and really have done well with it.  I come each morning on the site before I start my day, it gives me hope and the fear goes away when I read each lady share. 

Kay Babcock

dshapiro's picture
dshapiro
Posts: 28
Joined: Nov 2014

Thank you, Kay, for your great words and guiding me towards where I need to be in my mental status.  Hard to achieve but I have to achieve it somehow.  

I do have a question for everyone whose progress on this site have the benefit of experience.  Since my mind keeps wanting to grind to a halt I'm looking for what questions I should be asking my physician when I see him again on Dec 4th.  Exactly what questions should I be asking him?  I have a few already like "why did you not remove any lymph nodes?"..."Why are you are not doing any radiation between chemo?"...But, so far, that's all I have.  Any other suggestions?

Thanks, folks!

Debbie

joannewtta's picture
joannewtta
Posts: 43
Joined: Jul 2014

My treatment was carboplatin and paclitaxol given weekly with a one week break after three treatments. The first week was carbo and taxol and weeks 2 and 3 was just taxol. Dr said that success rate was just fractionally better with this treatment. I would have one week off and then start again. I had 18 chemos which is the equlivent of 6 founds every three weeks. I had a newlasta shot at the end of each cycle because my white cells would tank so bad and then had two blood transfusions during the whole thing. Had a month off after chemand then three brachytherapy (sp).

My cascer was UPSC stage 3C. One bad pelvic lymp node. I'm nine montths NED and feel good. 

 

Stick with this site, there are some wonderful women out there with great advise. At this point you just need to keep informed and deal with each stage as it comes. I am a control freak and usually want the complete plan laid out. This time I only wanted to know the next stage of treatment and then learn about it. It's more doable than you think going into it. I keep the same holiday traditions as Ive' done every year just let family help me a lot more. Don't forget to ask for help; that is the hardest part but next year you can "play it forward". Little did I know how soon I would be doing that. My daughter was just diagnosed with breast cancer and is having a double masectomy Dec. 8. I'm 69 (67 at dianosis 6/13 and she is 43. NOw living with us; also 17 and 18 year old grandchildren. My husband was dx with kidney cancer(dx one month before me). He had right kidney removed and small tumor on other kidney we are just watching. I'm just telling you this to say we are so much stronger than we know we are. I have to say however, that one more cancer in the family at his time would put me over the edge. :)

Write down questions, there are no stupid questions when it comes to cancer. My clinic held a group session about everythingyou needed to know about chemo. That was great. Ask if you clinic or hospital has anything like that. Put my family at ease somewhat.

Take care and make sure you keep posting. We'll alll be here. Been there, done that, and would love to help.

Joanne - Vancouver, WA

dshapiro's picture
dshapiro
Posts: 28
Joined: Nov 2014

 Thank you so much, Joanne.  So much info to take in and I truly appriciate everyone's input. 

Debbie

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2582
Joined: Mar 2013

Debbie, if I may make a suggestion:

DIAGNOSIS

Precisely what type of cancer do I have?Where exactly is it located?What diagnostic tests have you performed? What further tests are necessary?What information will these tests tell us?Where do I need to go to have these tests?When will I get the results? How will the results be communicated to me?Will you explain, in patient-friendly language, the pathology report to me?If I seek a second opinion, will I have to repeat any tests or procedures?

STAGING

What is the stage of my cancer? In patient-freindly language, what does this mean?Has cancer spread to my lymph nodes or anywhere else?How is staging used to determine my cancer treatments?

TREATMENT

What are my treatment options?Which treatments, or combination of treatments, do you recommend? Why?What is the goal of the treatments plan you are recommending?Who will be part of my treatment team? What does each member do?How much experience do you and the treatment team have treating this type of cancer?Will I need to be hospitalized for treatment or is this treatment done in an outpatient setting?What is the expected timeline for my treatment plan?How will this treatment affect my daily life? Will I be able to work, exercise, and perform my usual activities?What are the short-term side effects of this cancer treatment?What long-term side effects may be associated with this cancer treatment? Whom should I call with questions or concerns during non-business hours?Is nutritional advice given on what to eat to help in recovery from surgery or treatment?

You have to LOVE YOUR DOCTOR! You are putting your life in their hands and it is YOUR LIFE! You are the consumer here. Start a note book with everything you ask or they say. If possible to take someone with you ask them to sit there and write everything down - that is their job and you get to see if this is the doctor you want. Don't hesitate to ask for a second opinion. It is all overwhelming. The day I found out I went to a woman I work with who had Triple negative breast cancer and asked her "How do you wrap your head around it?" and the wise words from this angel, "You don't. Not today." That takes time and you will get there. Hope this is of some help.

It happened to Me's picture
It happened to Me
Posts: 204
Joined: Apr 2014

Well said.   Very well said.  Thank you.

dshapiro's picture
dshapiro
Posts: 28
Joined: Nov 2014

"you don't, not today"...I love that and some great things to add to the list for my first visit after surgery.  I thank you for you input and look forward to getting to know more from you all.  

Debbie

It happened to Me's picture
It happened to Me
Posts: 204
Joined: Apr 2014

Welcome Debbie,   I was dx with UPSC in June, 2013, Total hysterectomy July, 2013 and 6 rds of Chemo. (taxel/carbo) beginning in Aug. 2013.  The doctor I had was very thorough and I didn't really have to ask any questions except, "when do we start?"   Some of the questions I've learned to ask, was a pelvic wash done and what was the outcome, how much experience have you had with this kind of cancer, will I lose my hair, what is the % of survival with and without treatment with current statistics, what are some of the possible side effects with treatment, what is the % of recurrence.  What is my CA125 and is it a good marker for me, if you haven't had surgery, ask when you can have surgery (if you want it), what they will take in surgery, will they use DaVinci or cut you open, ask how many surgeries Dr. Cutie has performed.

On the % questions, if you don't want to know, don't ask.  My doctor told me that I had a 50/50 chance of it recurring within 5 years.  I choose to be on the 50% that don't get a recurrence  :)   

If you don't feel comfortable with the answers or lack of answers, get a 2nd or 3rd or more opinions.  Make sure that where ever you get this done at is a cancer facility with the best doctors.  These rare kinds of cancers need to be dealt with at reputable hospitals that deal with them all the time.   That is my opinion only.

Stay as healthy as you can and get as much rest as you can, before, during and after.  You have alot on your plate with your daughter and husband with cancer too.  Ask for help from family, friends, church, employers and contact ACS for other resources that may be available in your area.

I am 10 months NED (No Evidence of Disease).  I've changed my lifestyle somewhat to give my body enough ammunition to keep the cancer from getting out of control.  That being, reduce stress, stay away from as much refined sugar as possible, exercise, stay positive, enjoy each day and find something to be thankful for each day.  Focus only on the next appointment and don't use the "what if's".

You are a woman and you are strong.  We are women, hear us roar.  Take care Debbie.    Use this board often.  We are here for you.   I know the other ladies will have more questions that you can ask.

Jeanette

pinky104
Posts: 574
Joined: Feb 2013

Don't sweat the chemo too much.  For me, it wasn't nearly as bad as I'd expected from what I'd heard and read about it.  My oncologist ordered a drug called Emend that I took in the days prior to chemo and when I started each round of chemo.  I had absolutely no nausea or vomiting because of that drug.  I lost my hair about 10 or 11 days from my first chemo, which was the most upsetting thing for me.  During chemo, the nurses started off putting two or three other meds in my IV to prevent an allergic reaction.  One was Benadryl, and I don't recall the others.  For about half an hour after that, I felt like I had been drinking alcohol.  I had a nice little "high" feeling.  The rest of the chemo process was uneventful.  It took somewhere around 5 hours or 5 and a half hours, so bring a good book, or watch TV if they have one where you're going.  A week or so into chemo, I got a few sores in my mouth.  I was given a liquid to rinse my mouth with, and I only had the sores for a few days.  About halfway through my six rounds of chemo, I started feeling very dragged out and short of breath when I walked through stores.  I refused the Neulasta shot and got a tranfusion instead.  I refused Neulasta because it had a risk of heart attacks, and my younger brother had suddenly dropped dead the week before of one. I later found out I had hemochromatosis, so he probably had the same bad genes for that as I did.  I did lose my appetite slightly from the chemo, but I forced myself to eat. Those were my only problems with chemo during it.  Afterwards, my feet got very numb, and a couple of years later, I got short stabbing pains in my toes. I tried accupuncture but it did nothing for me.  I tried Lyrica, but that didn't work, either.  Now, I just live with them.  I'm four and a half years out from surgery with stage IVb UPSC.  I had nothing to kill off the cancer except for chemo.  I did fine until this year.  Now I have a pea-sized mass that's being watched, and when it grows large enough for my gyn/onc to find in surgery, he will remove it.  I have to go back on 12/8.  I wouldn't be surprised if the mass is nothing, as I have almost no symptoms, just a few occasional pains which could be anything.  The mass could be a fluid collection from having had lymph node removal. I hope that's all it is.

When I first talked to my oncologist, I asked him about survival rates.  He told me he doesn't like to discuss them.  He said that if a cancer has a 90% survival rate but you happen to be in the other 10%, those high survival rates won't do you any good.  He had a point there.  You might want to ask how often you will have to have labwork done. I had mine done weekly during chemo.  It was a bit of a pain to go that often, but it did help the oncologist diagnose my anemia that was caused by chemotherapy and order my blood transfusion. I've heard some oncologists order labs biweekly.  I had questions about whether I would be on disability or if I would be required to keep working during it all.  My oncologist eventually gave me 6 months off, which was great.  I didn't want to work during it.  The stress from my job would have put me over the top.  I imagine your job is pretty interesting.  I've had some experiences myself which have made me believe we have a connection to the spirit world.  For example, one time my first husband had gone to visit his parents and had taken along our Old English sheepdog.  I had a very dark feeling come over me about 4:30 that day, and I could tell that something was wrong, but I didn't know what.  It turned out the dog had been hit by a car just at that time. I guess I was a little bit psychic that day.  Anyway, I wish you luck in your treatment, and hope it all goes well for you.  

  

dshapiro's picture
dshapiro
Posts: 28
Joined: Nov 2014

Yes, working the paranormal is a real eye opener, and perhaps a soul opener as well.  I'd be happy to discuss your experiences with you at any time.  I'm usually the one everyone wants around their camp fires. I have the best ghost stories and mine are all true. 

I do appreciate your support and to hear all the different ways and means to this diagnosis.  Feel like I'm loaded for bear and can start moving forward again.  

Thank you All! I'm sure I will have more to discuss and question soon. 

Debbie

Abbycat2's picture
Abbycat2
Posts: 644
Joined: Feb 2014

 

I would love to hear more about it. I have had my share of experiences with the paranormal. When I was in grad school in Illinois, I saw a psychic who was well-known and worked often with the police. She surprised me by telling me almost immediately that I had psychic ability. I have had a lifetime of unexplained experiences. For example, I was sitting with 3 friends at a counter when suddenly a salt shaker started to move without human contact across the counter towards me. I thought my friend Bob was pulling some kind of prank on us, but he was as startled as the rest of us. Another time, several days after my dog died, my friend and I were jogging and suddenly I heard Ralphie behind us, his dog tags jingling. When I turned to look, there was nothing-no dog- following us, and my friend asked me if I heard something, too. Well, it turned out that we both heard a dog jogging about 20 feet behind us! These odd experiences used to frighten me, but not anymore. What exactly do you do, research perhaps?

 

Cathy

dshapiro's picture
dshapiro
Posts: 28
Joined: Nov 2014

Well, off to Dr. Numnum's (aka Dr. Cutie) for my post hysterectomy follow up and to get the chemo plan of action.........

Since we are all down with colds in this house I doubt anything will be happening soon. 

Everyone have a Great DayLaughing

Debbie

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2582
Joined: Mar 2013

Debbie, please let us know the plan. 

dshapiro's picture
dshapiro
Posts: 28
Joined: Nov 2014

Well, doc started off our converstation by saying a single word..........."Strange".  LOL

He said how my MMMT was caught couldn't have been stranger or a better catch.   However, I will be having a CT scan shortly then 4-rounds of chemo.  He said he would love to tell me he caught it all but he can't do that because of the aggressive nature of MMMT.  We discussed the chemo in some small bit.  We talked about cancer cells retention rate for chemo treatments and how you can't just simply repeat cancer treatments that they have to change until your cancer "forgets" about it.  Something like 12 months.  

So, I can either not do chemo now and wait to see if it spreads to the liver or lungs and attack it then with the potent chemo or do the potent chemo now and if it stills spreads then they would use a different form of chemo if it does resurface.  Trying to decide which way to go.  Doc did say that if I were his mother, wife, daughter he would be doing the Big Bomb chemo now so have to consider that as well. 

 

Debbie

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2582
Joined: Mar 2013

Debbie,

I was lucky my UPSC was caught early (Stage 1A) I knew it was an aggressive cancer and I wanted to do everything possible to wipe it out.  Knowing that chemo/radiation was a possible treatment, none the less, I was very upset when I heard I had to have both, I did realize that in the end I was trying to kill any stray little cell that may be hiding behind a kidney or someplace weird and knock it out while it was small.  MMMT is very aggressive and if you were lucky to catch it early you may consider the same. 

In the end I decided that I didn't want to play with waiting and worrying about "when" and considered treatment more 'preventative'.

 

dshapiro's picture
dshapiro
Posts: 28
Joined: Nov 2014

Thanks, Cathy.  That's my decision too.  I am going for the chemo and notified my doc to get the schedule rolling.

Debbie

dshapiro's picture
dshapiro
Posts: 28
Joined: Nov 2014

Finally had my full body scan today.  Only took 4-hours. (yeesh!)  CT only took about 10-15 mins everything else was all prep work with labs, due to my low GFR, then had to have half a bag of fluid to help break up the contrast and of course drink the nasty drink.  Drink was much better than it used to be but still tastes like water from the hose. 

After the CT was done and I was half way to my car, the nurse came running up to me saying she had to finish the other half of the bag of fluids.  So, back in I went for another stick but this vein blew and the fluid just went into my arm and not the vein.  So, stopped that and was told to drink 80 oz of water today and tomorrow......

After all this that CT report had better come back squeeky clean! 

Debbie

AWK
Posts: 364
Joined: Mar 2013

Hi Debbie!  I am into my 21rst month since being diagnosed stage IIIc UPSC, second opinion post surgery had me at stage IVA.  I have yet to be NED and in fact am living with cancer - on my third round of different types of treatments (not including radiation) for five metastic tumors.  Sounds bad but I am doing well, treatments every three weeks and working full time, riding horses and trying to stay focused on life and living it well.  Here is the thing about chemo that someone told me and holds true - everything that happens is temporary.  You might feel like you have a bad flu, then you recover,  have some pretty good days and do it all over again.  It is amazing how one recovers.  I have yet to have an infection and get through it all pretty well aside from being tired.  You can totally do this!  Be kind to yourself, be open to the experience and give yourself permission to have bad days too.  I had some amazing experiences because of my cancer and I am grateful for that.  Stay Strong and Thrive! Keeping you in my prayers.  Anne

dshapiro's picture
dshapiro
Posts: 28
Joined: Nov 2014

Thank you, Anne, for your great words of wisdom.   I am beyond thrilled to report my CT yesterday was squeaky clean though I do still have to do chemo but at least now it is more on the preventative side and not so much on the attack side.  I truly hope that one day soon you will also get a Clean-Slate CT too!  Really don't think I could have held on to my sanity without the wonderful ladies here !!!

Blessing to you ALL 

Debbie

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

I am so glad you got a clean CAT scan.  Good luck with your chemo treatments.  Are you getting a port?  You talked about the vein blowing with fluids after your CAT scan.  You sure do not want the chemo going into your tissues.  Glad your MMMT was caught early. In peace and caring.

dshapiro's picture
dshapiro
Posts: 28
Joined: Nov 2014

Yep, having port installed on Monday but I do have a question, the chemo treaching nurse said that I have to go back to Doc's office the day after chemo for an injection and that the injection couldn't be done elsewhere (closer to home) due to the side effects.....does anyone else get this shot and if so, what is it for?  Haven't seen that discussed yet or I've missed it while scrolling thru all the infor here.

Thanks All and have a wonderful "free" day!

Debbie

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2582
Joined: Mar 2013

Debbie, I am glad you asked this!

First, what kind of chemo are you getting?  I think most of us start with the carboplatin and taxol drug, but it could be different. 

I work with a woman who had to get a shot of Neulasta to help build up their white cell count after her chemo for breast cancer.  I didn't get any shots and am curious what the other women here did.

dshapiro's picture
dshapiro
Posts: 28
Joined: Nov 2014

I'm getting the carboplatin and taxol too, 6-treatments, so don't know what this shot thing is all about but I'll have the answer after Tuesday and let ya know!  It might have something to do with my kidneys as my grf is low at 48.  But, just guessing there. 

Debbie

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2582
Joined: Mar 2013

What is grf?  I am not familiar with that. I might say "DUH!" when you tell me, but I have so many acronyms in my daily life I can't keep track of them all.

joannewtta's picture
joannewtta
Posts: 43
Joined: Jul 2014

It is probably a Neulasta shot to help build up your white cell count. I had six of them and no reaction. Some people have some serous bone pain. I was told to take one Claratin a day. I had 18 chemos. One each week for three weeks, a Neulasta shot and then one week off. I was a stage 3c UPSC and finished treatment including my radiation in Feb. Feel good and looking forward to one year of NED.

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

i am glad you are getting your port.  The  shot you will be getting the day after chemo is a Neulasta shot.  It is to stimulate white blood cell production.  The shots do cause bone pain.  I found that taking Claritin the day before the shot and a couple of days after did reduce the pain.  I only needed two shots even though I have had 19 chemo treatments (From 3 different rounds of chemo).   Some doctors automatically give the shots, and others wait until the white blood count drops.  I was lucky on the whole I had good blood counts.  Good luck with everything.  In peace and caring.

dshapiro's picture
dshapiro
Posts: 28
Joined: Nov 2014

Sorry, GFR is for kidney function.  Your kidney should function above a certain level or, a fully functioning kidney would be like 70 or above.  My kidneys are in decline and have been but it is a slow decline.  I have a real concern going that all the surgery, more specifically the anesthesia, from my last two back to back procedures may have already reduced my GFR and now with chemo starting I'm afraid I'll go right from chemo to dialisys when chemo is done.

Since my hysterectomy was on Nov 6th I'm not sure if the hospital will run blood work prior to my port placement since it is being done at the same hospital.  Hope they do. 

In truth, I'm beginning to question a few things about chemo. Like, my carcinosarcoma was staged 1A and was found inside a polyp inside the uterus which has been removed.  Chemo is a preventative measure like chasing down one wayward cell out of the millions in my body.  I am asking the question.......is this really needed at this time especially now that the CT came back clean?  I know this is a ******* of a cancer and that I am hugely lucky it was found so early.  So, questioning the toll this will take on my body, mind, life, family and, well, you all know those questions.  I also know that should the cancer come back within the next year hitting a different organ I won't be able to have the same chemo done but will have to move to a more toxic therapy. So, do I wait and see or do I just get this done and get on with life?  

I know these are questions everyone here has asked themselves and I know I'm the only one who can answer these questions for me........But, really?  So, that's my rant for today.  Just another day in the cancer lane of life. 

Thanks, All, for letting me get this out which I hope will help me with my decision.  You guys are all GREAT!   

Debbe

 

Hybridspirits's picture
Hybridspirits
Posts: 209
Joined: Nov 2012

you have good questions.  I was originally diagnosed with stege 1A - MMT simialr to you on 12/12/12 and decided to have a second opinon.  We chose Dana Farber Cancer institute in Boston Mass. they came back NOT MMT,  Stage 1A but high grade.  THis was a rare change in diagnosis that the consulting oncologist called me at home at night to discuss and told me she had already called my oncologist.  We decided to break the tie and sent for a third opinion at Memorial Sloan Kittery Cancer Institute in NY NY.  They also came back with NOT MMT but Stage 1A - high grade.  even though it wasn't MMT all three suggested chemo and the reason was that both MMT and high grade isn't predicatble and you don't know if there are any microscopic cells that CT Scans don't find.  However,  i am sharing about the second opinions and here third that if you have these questions or doubts on your treatment is getting a second opinion an option for you.  Have you discussed your concerns on chemo and current kidney function?

my theory is if we are questioning we might have doublt and treating cancer per my oncologist is an art not a science. So I would guess that there are a few different approaches and if doable maybe a second opinion to see what other dr's might suggest

either way I did have the chemo 6 rounds as well as internal radiation

so far okay but going for my checkup in two weeks, so hoping still okay

Sharon

 

 

Teamkelly's picture
Teamkelly
Posts: 63
Joined: Sep 2012

Debbe,

i post for my sister in law Kelly. She was diagnosed in 2012 in Southern California with uterine carcinosarcoma/MMMT, we went to Sloan Kettering for a second opinion and they asked for all the slides from the surgery to do their own pathology. They found cancer was in more lymph nodes than doctors in SC found. This cancer is definitely one worth getting second opinions on before making decisions.

 

Nicki

dshapiro's picture
dshapiro
Posts: 28
Joined: Nov 2014

Thank you, All,for your information and advise.  I am going to go ahead with the chemo as that was my initial gut feeling and chasing down that one cell with this type of cancer is for the best in the long run.  Doctor has stated that because my stage was 1A and most likely still contained within the polyp inside the uterus adn that chemo will reduce my chances of recurrance from the current 20% to 10%.  I'll take the reduction though I am not looking forward to it at all.

I'll keep posting as the treatments progress and maybe that will help the next person along as you have all helped me.

Debbie

AWK
Posts: 364
Joined: Mar 2013

This just came up for the first time for me three weeks ago.  I just went through the normal pre-treatment tests including urine on Friday, apparently this is a potential side effect of Avastin which I am currently being treated with.  I will find out tomorrow if it is a one time thing or the beginning of a new trend for me.  Hopefully it isn't!  Hugs, Anne

dshapiro's picture
dshapiro
Posts: 28
Joined: Nov 2014

Hey All, 

I have my shiney new port installed and so far the labs don't want to use it and will keep poking my veins for blood work.  That just leaves chemo and future CTs for this little needle bucket under the skin.  The actually procedure went really well.  The meds given for the procedure were pretty useless as I was wide awake thru the whole thing so thank goodness the tech had the guts to really numb everything up perfectly as I really didn't feel a thing unless he was pressing on the port to potition it and that was only pressure.  No pain at all.  However, aroung midnight when the numbing started to wear off...............oh boy!  Made it thru that healing process without pain meds and only a bit of pulling and soreness now.  

During my chemo training with the chemo nurses I finally blasted out about why the docs don't hand out xanex, at the very least, when patients have to start dealing with this beastie called cancer.  Before I left chemo training I had my xanex script in hand and it has made a world of difference in my inner self. I can finally think about all this without the mental pain and stress which allows me to get a good night's sleep and allows me to get stuff done without that mental bog down.  

My first chemo treatment is on Jan 7th.  But, going to push that back to the deepest part of my brain until close to start time so I can enjoy the holidays with my family and friends.  

I truly hope you are all going to have a great year with your families this year as well.   

Debbie

Abbycat2's picture
Abbycat2
Posts: 644
Joined: Feb 2014

Hi, Debbie,

I am glad to hear that you have your port and that your surgery is behind you.  I remember how painful it was afterwards for me, as though someone was trying to pull the muscles out of my chest.  That, too, passed, thank goodness.  When I had my first round of chemo, Carbo/Taxol, I wish the nurse told me in advance that I would probably need to use the bathroom due to so much fluid entering my body.  I almost didn't make it to the toilet fast enough, what with the IV pole, bags, etc. that I had to drag into the tiny room with me!  Rounds 2 through 6 didn't seem to have quite the same affect as that first round.

Have you made any plans for when you will lose your hair?  I was able to pick up two wigs from the local American Cancer Society office.  Have you been to the office nearest you?  The ACS staff is wonderful and very supportive.  I discovered an entire room filled to the brim with free wigs and wig products! It made the horror of losing my hair somewhat more tolerable.  Two weeks after my first chemo, my thick shoulder length hair came out in clumps.  I had it cut short so that the loss was not quite as noticeable.  Some women shave their heads, but I didn't think that was a good idea for me.  By the sixth chemo round, I was bald and was pretty much use to wearing my wigs by then.  Losing my eyebrows and eyelashes was another crushing blow.  That happened later in the chemo treatment process.  Until that happened and my coloring became pasty, I thought that I could pass for "normal".  I didn't want the world to look at me and see an ill woman!  The last thing I wanted was to draw attention to myself and my sickly appearance.  I admire those brave souls who don't care what others think and proudly display their bald heads.

I wish you only the best with treatment!

Cathy

 

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dshapiro
Posts: 28
Joined: Nov 2014

That is a great point about chemo, Cathy!  

My chemo nurse did advise that I wear a pad especially my first day because the bathroom urge can come on pretty fast and yes, you do have to drag the equipment in with you so that is super of you to bring that forward for everyone.  It's the little things...ya know?  lol.

Right now I'm trying to figure out how to draw eyebrows.  I may be a very rare woman but I've never had to draw or add color or anything to my eyebrows.  I can't find a stencil that mimics my natural eyebrows.  

Debbie

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Ro10
Posts: 1579
Joined: Jan 2009
  1. Try  today attend a Look Good, Feel Good program.  It is sponsored by the American Cancer  Society.  It is a free program.  You will get free make up and tips for applying it.  They also showed ways to tie scarves and had some free wigs available at the one I went to.  Hope you can find one in your area.  My Cancer centers offer them at intervals.  
  2. Good luck with your first chemo.   I hope your port area is less painful now.  You said your lab was not using the port.  I have all my la s drawn from my port.  On chemo days, they use the port to draw the lab, and leave the needle in for chemo.  
  3. Hope you have a Merry Christmas.
dshapiro's picture
dshapiro
Posts: 28
Joined: Nov 2014

Thanks, Ro,

I did contact the American Cancer Society today and I have the addresses and phone numbers Now, just need to find the time before the 7th. 

Oddly, the lab at my chemo center where my doc is housed, doesn't use the port for labs but I'm looking into a stat lab closer to home and it seems that will be done at a hospital so I'm going to put my foot down and make them draw it from the port.  I mean I bought the dern thing so use it people!!!! 

Merry Christmas to you too and to everyone here. 

Debbie

Tarans
Posts: 13
Joined: May 2014

First, I have been absent from this board for a few months.   Second, glad to hear that you are doing as well as is reasonable with you current treatment.  I just wanted to mention to you about the port. Sometimes they don't take labs from the port because they can get false data for some of the tests. I would talk to the doc about it, that you would prefer the port to be used and to explain to you when it shouldn't be used for labs.  Sometimes the nurses actually make the mistake - they have to take the labs BEFORE they give you any fluids. My brother has had a port now for nearly 2 years so have gone through pretty much every issue possible, although his situation is not related to cancer at all.  In most things, you as the patient have to pay attention to the order in which things are done.

Some history:  I was diagnosed with MMMT late May 2014 with stage 1A but chose not to get the chemo unless more cancer appears. I have a high risk for other cancers due to Lynch Syndrome (which is associated with this type of cancer).  I've been focused on vision issues, so really have not spent much time at all thinking about what-ifs for future cancer issues. I guess sometimes it's better to have something worse to focus on - not that I recommend it.  I'm glad to hear that the ACS is very helpful, particularly since you live so far from where you are getting treatment. yay!

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Hopeful162
Posts: 82
Joined: Sep 2014

I have not posted since before my original surgery in October for UPSC, and here I am now anticipating my second carbo/taxol treatment on Monday after Christmas, port in place. So it has been an interesting read to follow what has been happening with all of you and comparing that with my experience over these last couple months.

Two things I wasn't quite expecting through all this was the significant pain for about three days following the port insertion (though now it feels great and I am glad I got one) and the terrible bone/joint pain I had for days 3 to 6 following my first infusion. I could not get comfortable and could hardly eat or sleep. I lost 8 pounds, but have now gained back 4. Somehow my doctor's pre chemo comment that I might feel like I had the flu for a couple days did not begin to cover it! I never did have nausea, but I dread the thought of going through that butt-thigh-knee pain again. Surely there is a good pain medicine I can try this time. I will have a talk with my oncologist just prior to my second chemo and hope this can be addressed. By the way, my stage is 1A, grade 3 (UPSC) which  is why I am having chemo at all. My doctor says this is my chance for a cure and not to waste it by resorting to observation only, giving this cancer a chance to sneak back and show up somewhere else.

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ConnieSW
Posts: 1436
Joined: Jun 2012

The butt, thigh, knee thing was never again as bad as it was with the first chemo..  Hopefully that will be true for you, too.  It was awful, though, wasn't it?  I remember I couldn't sit and I couldn't lie down.  I spent an evening just circling my dining room table.  It's a wonder I didn't wear down a path in the carpet!

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Abbycat2
Posts: 644
Joined: Feb 2014

Hi, Hopeful,

I had Carbo/Taxol, 6 rounds, and my back pain started after the first chemo and lasted throughout the treatment.  The back pain that I experienced was the worse of all my chemo symptoms.  I ended up having two epidural shots spaced a couple of months apart.  Finally, that gave me relief.  From what I've read here, many women have experienced severe joint pain once the Carbo/Taxol chemo started.  I sure hope you don't go through what I went through.  Unlike Connie, I was unable to stand for more than a few minutes and walking was agony.  I had relief only when sitting with my legs up.

Warm Wishes,

Cathy

dshapiro's picture
dshapiro
Posts: 28
Joined: Nov 2014

Spoke with the American Cancer Society and they gave up some info about the chemo related bone and joint pain.  They said to start taking Vitamine E which is suppose to help coat the nerves plus also take tregratrol (sp) before and after chemo to help minimize the pain.  They also suggested lidocaine patches. They sent me a ton of other info for life in the cancer lane that I'm still scrolling through and will pass on anything that I do find useful as I do the chemo dance, which will be accompanied by the merry cursing song.  Still trying to keep my sense of humor box wide open because I know that is still my biggest defense against .........well, everything.  

My best to you All!

Debbie

ConnieSW's picture
ConnieSW
Posts: 1436
Joined: Jun 2012

Love you sense of humor.  Good luck.

dshapiro's picture
dshapiro
Posts: 28
Joined: Nov 2014

Just thought I'd change up my profile pic for a chuckle! 

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

Cute.  Thanks for the chuckle!   Hope you are having a good weekend.

dshapiro's picture
dshapiro
Posts: 28
Joined: Nov 2014

Day One of Chemo went off without a hitch.  The 5-steroid pills from the night before plus the 5-steroid pills morning PLUS the steroid injection given at the time of chemo this morning has me  ready to jump in the squared circle and take on Hulk Hogan!  Temp here is zero degrees and it was nothing to walk outside in a t-shirt.  Didn't feel a thing.  Had absolutely no nausea just a slight headache from the steroids.  Otherwise, I'm ready to hit the spring cleaning now. lol.  What a rush this stuff is.

Right after Chemo I went and visited with the American Cancer Society and received a free wig, night cap, hat and scarf.  Got a great reciepe book and also found out I can stay at the Hope House at the American Cancer Society for free with will help with being only a one car family so John doesn't have to lose two days of work just to shuttle me around.  There is a free transport van that will take me to chemo from the Hope house to and from chem and then the next day for the shot. So, John can drop me off for chemo on Wed morning and pick me back up Thursday night when he is done at work. 

Big kudos to all my chemo nurses!!!!!  They were all great. 

Of course, with every good "high" there is the coming down part,so, with Claritan in hand I will be heading back to tomorrow for "the shot". I know the effects of all this won't kick in for about 48 hours, more or less, but I did take off today, tomorrow and friday to recover enough to hopefully be able to return to work next week. 

Hope this info will help those just starting out for their first round of chemo though I know we are all different and will react differently.  I still recommend asking your chemo nurses for xanax as it really does help, or I should say, it has really helped me getting to this first round.  It took away the fear and the stress and allowed me to think about other things as well as thinking about all this cancer stuff without going over the deep end to far. 

Take care and stay with the hope!

Debbie

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

So  glad your first chemo went well for you.  Sounds like you have good plans with the Hope House to stay for your shot the next day.  The American Cancer Society is such a great resource.  Don't know that anyone has mentioned the big possibility of constipation after chemo.  Lots of fluids are important.  Many people use Miralax to keep them going.  I used  a stool softener ( colace - generoc called docusate sodium) And apple juice.  Find what works for you and use it each chemo treatment.

We know what you mean about all the energy from the steroids.  We used to say you feel like a hamster on its wheel just turning and turning.

I hope you already took your Claritin before you get the neulasta shot, and then several days after the shot.  I first got Neupogen shots while I was hospitalized for febrile neutropenia.  I had great pain after my second shot.   So when I got a Neulasta shot after my chemo, I took the Claritin and the pain was much less.

i hope your time until the next chemo goes well for you.  In peace and caring.

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