lost

bob13440 said:

question

my wife us having chemo once a week for 5 months. this seems very agressive. Any thoughts?

There are many different ways chemo is given.   Some once a month for 6 months, every couple of weeks, etc. etc.    With the once a month, the dose of chemo is larger than the once every several weeks, etc.   I, for one, had a reaction, so instead of once a month, I went every two weeks for six months.   With it being every week, the dose will probably be lower so that it will be more tolerable and your wife can handle it better.

The slower and longer a drip is the better is what I heard.

bob13440 said:

Ok

thanks Kaleena. Any bit of info or advice is greatly appreciated.

i am surprised they can tell you how much chemo Lorraine will need before surgery is done.  Most of us had chemo every three weeks with a combination of taxol/ carboplatinum For a total of 6 treatments.  I had the "Sandwich treatment" in which 3 chemo treatments, the radiation treatments, then 3 more chemo treatments were given. 

Some people did have weekly treatments when smaller doses of taxol were given weekly, and then every 3 weeks the carbo platinum was added.  It is thought that the lower doses given weekly are easier on the body and tolerated better.  

Only a few people had chemo and radiation at the same time.  I would think that would be hard.

I hope that Lorraine will be getting a port for the chemo and labs.  Chemo is very hard on the veins,and having chemo weekly will require a lot of sticks.  They draw labs before each chemo to make sure the blood counts ( both red and white blood cell counts) are okay to receive  the chemo.  

The port can be used later for CAT scans, too.  I have had my port for almost 6 years now. 

I hope that you and Lorraine have a good weekend.  We all know how hard the waiting is.  Remember one day at a time.  I peace and caring.

You have already witnessed the love and support from this board.  I love this group and the information and encouragement they have provided.  I was diagnosed in June, 2013 at the age of 51.  I had UPSC as well.  I had surgery in July, 2013 and started chemo. in Aug. 2013.  The gyn onc. determined that I would benefit from radiation.  I had 6 rounds of carbo./taxel.  I lost my hair and chose to not get a wig.  I decided that I would get my hair shaved the minute I found out I was losing it.  Some wait until it has all fallen out.

A couple of tidbits that I can think of that haven't been mentioned is to decide before it actually happens what you will do if you lose your hair.  Don't try to go off the meds too early.  If something isn't working, tell the doctor and nurses.  If you have to have chemo., keep track of anything new that happens to you.  There's a possibility of neuropathy, nausea, hair loss, fatigue etc.  The nurses know what red flags they are looking for.  If you have alot of people who want to know how Lorraine is doing and you don't want to make tons of phone calls, use facebook or caringbridge.org as a means of getting information out.  I used caringbridge and it was a lifesaver.  It also is a good way to journal for your own sanity.  You can give as much or as little information as you feel like.  Consider changing your lifestyle if need be.  Stay away from sugar.  Keep stress as low as possible.  Laugh alot  (I made this horrible journey fun 'so to speak' ".   Ask for help.

As you know more after surgery, there will be more that we can share with you.  I read and agree with all the encouragement that has already been written.

Lorraine has become a member of the Peach Sisterhood.  You are a terrific husband to search out a support group for both of you. 

Jeanette

bob13440 said:

Jeanette

Very inspiring words, thank you! Interesting strategy, shaving your head, will discuss that with Lorraine. About a year and a half since you were diagnosed, you seem to be doing great.  How are you feeling these days? Do you live a normal life and do the same things prior to surgery and radiation? Sorry if these questins are too personal, just trying to feel some hope. Thanks for posting!

Nothing is too personal in this group.  One thing I have to say is that I have had many amazing and incredible experiences because of my cancer that I wouldn't have had without it.  I can't explain it fully but I have.  From family, friends and strangers to nurses, doctors and other medical professionals.  I enjoy my sunrises and sunsets, my morning walks with my dogs and my time riding horses in a deeper way.  Work is mostly good too although I have to watch my energy and stress levels.  We are always talking about whether or not I should go on leave again (my husband is a proponent.). I really appreciate a good cleansing breath, the big exhale and a good cry too.  This group has been a huge part of this too.  

My life is different now but more full in many ways and just my new normal.  My husband and I are closer than ever, in a strange way more connected and intimate although there are times I close off a bit too.  I hate seeing his worry and pain.  My motto is stay strong and thrive.  I send her wishes for all of this and you too.

AWK said:

That is what we are here for!

Nothing is too personal in this group.  One thing I have to say is that I have had many amazing and incredible experiences because of my cancer that I wouldn't have had without it.  I can't explain it fully but I have.  From family, friends and strangers to nurses, doctors and other medical professionals.  I enjoy my sunrises and sunsets, my morning walks with my dogs and my time riding horses in a deeper way.  Work is mostly good too although I have to watch my energy and stress levels.  We are always talking about whether or not I should go on leave again (my husband is a proponent.). I really appreciate a good cleansing breath, the big exhale and a good cry too.  This group has been a huge part of this too.  

My life is different now but more full in many ways and just my new normal.  My husband and I are closer than ever, in a strange way more connected and intimate although there are times I close off a bit too.  I hate seeing his worry and pain.  My motto is stay strong and thrive.  I send her wishes for all of this and you too.

I, too, have had many incredible experiences in this journey.  Same as you.  Doctors, nurses, other people in the medical field, family, friends, church family.  Since I am self-employed, I couldn't work and when my savings and checking were exhausted, people sent me checks in the mail, the church paid my mortgage for 4 months in a row.  I applied for food stamps, disability, financial assistance from the hospital.  I was blessed to receive all of them.  I had insurance but had a $5500.00 deductible.  The hospital took care of it and wrote it off.  

My perspective on people changed.  My attitude changed and my love for people's stories began.  I don't know what other people have been through, so when I see someone in line with food stamps, I don't think, wonder why you don't get a job.  I have a new respect for the state helping people who are hard working people who just need a hand for a while.  I am loving the changing of the seasons and even the cold weather.

I've decided I have too much stuff and am downsizing in my house.   I'm enjoying life more.  Laughing more out loud. 

I didn't find this group until 4 months after my chemo. ended.  Wish I would of found it sooner but thankful I found it.  These women are awesome.

I can honestly say that I am thankful for cancer.  I don't ever want it back.  I am a much better person because of it.  Much poorer financially too, but what's money.  lol     If I never had cancer, I wouldn't have grown as a person and become a much more thankful person that I am now. 

I try in every situation that I face, to find something to be thankful in.

I could go on and on but I won't. 

bob13440 said:

bad day

I've only been on here for a week and you have all made us feel extemely welcomed. Here's what today's worries and discussion involved, feel free to be upfront and tell me if this is normal or there is a possibility this can happen... "What if during surgery they find the cancer is worse than they originally thought?" "What if surgery is unsuccessful and i don't wake up" These thoughts and questions have consumed most of the day, it's some overwhelming stuff. Is there anything to take comfort in to douse these horribile thoughts? Did any of you think like this? Yesterday was full of positive thoughts and what we're going to do when chemo's over and we hear the word "remission". I have so much respect for all of you, you're all doing well and are so upbeat. We hope to be in your shoes within a few months. I cannot thank you enough for sharing all of your comments, tips and advice.

Sorry it is a bad day.  We all know the fear of the unknown.  " Worry will not change the outcome, but it does rob you of enjoying the present.".  Someone told me that, and I have tried to practice it.   We probably all got a " worse" diagnosis than anticipated After surgery.  Because I had no symptoms except an abnormal PAP, both my Gyn and gyn/ onocologist felt the hysterectomy would be all I needed.  So I was totally shocked to find out the day after surgery I would need chemo and radiation.  Later I found out I had Stage 3- C UPSC, a rare and aggressive Cancer.

I was also told it was not curable,but treatable like a chronic disease.  I had my few days of feeling sad, and then I decided I would fight it with all I have.  I have never expected remission, but enjoy the times I have between treatments, and hope the time between treatments extends longer and longer.  

I had 18 months between 1st and 2nd rounds of treatment,but only 7 months between 2nd  and 3rd treatments.  They told me it would probably be less than 7 months when I had another recurrence.  But they were wrong.  My last chemo was 5/12.   I did have intense radiation last fall to a lymph node near my trachea.  It did shrink the lymph node, but another lymph node in my abdomen is now growing.  So there will be more chemo in the future.

I am a retired nurse and have taken care of many many people who had surgery.  All of them came back from surgery.  Have you known someone who did not awaken from surgery?   Is that where your fear comes from?  I am not trying to minimize your fears, because they are real to you.  I am trying to understand why you feel this way.  

I don't want to discourage you from expressing yourself or asking questions.  I just want to share my experience.   I hope tomorrow is a better day for both of you.   In peace and caring.

bob13440 said:

Ro

please do minimize our fears! No, we don't know anyone who didn't come out of surgery, have just heard about complications, that's all. She's going to take all of next week off from work so she can be as rested as possible for surgery. thanks Ro!

My ob/gyn said they thought it was caught early only to find out that it was UPSC (like Ro) and after surgery, we found out it had spread.  I was Staged at IIIa.  I had no lymph node involvement and so far, no recurrences.

I would encourage you and your wife to have a mindset of "I will wake up from surgery".  My surgery took 5 hours.  My doctor said that he would open me up if he thought that he couldn't see everything.  As it turns out, the robot found a pea sized tumor on the back of my pelvis, it wouldn't of been seen with the naked eye.  Most surgeries I've heard of, haven't had any complications. 

I would ask the doctor before surgery what kind of surgery will be done.  Will it be da vinci robotic assisted or will you be opened up?  Ask if there will be morcellation done.  Don't let them do the morcellation.  That has been controversial and it involves chopping up the uterus into tiny pieces and possibly allowing the cancer to spread.   Not to scare you, just to advise you.  

Is Lorraine in good health?