brand new questions

Bumblebee511

I just found out I have Ovarian Cancer on July 12th.  I should first say I live on Maui.  It was a strange thing on June 20th I thought I had a bladder infection after a vaginal sonogram and a ct scan my OB/Gyn decided I needed an emergency hysterectomy because my ovary had flipped.  After opening me up they decided it was cancer took some biopsies and told me I had ovarian cancer and that I needed to go to Oahu.  The samples came back negative.  The oncologist on Oahu decided he would go ahead and do my hysterectomy and while he was in there he said he didn't like the way it looked and thought it was cancer but all the biopsy pieces he sent came back negative.  He said because of that he didn't take as much as he would have had it been positive.  So I went for my follow up visit on the 12th not thinking about cancer at all only to be told that after they got my ovaries disected they found cancer.  I start chemo on the 24th.  The thing is I didn't ask very many questions.  In fact right now I feel so overwhelmed I'm not sure what questions to ask.   I feel kind of stupid now but at the time when he said you have cancer somewhere in my head I started to scream and I didn't hear much after that.  I have an appointment to speak with on the 24th before they start the chemo.

I know he said it was slow growing and he wants to do chemo and maybe some radiation.  I have been all over the internet reading everything I can and this morning a woman in MI called me to tell me she received an email copy of my flight information and wanted my email address so she could send it to me.  We started talking and she has cervical cancer and told me about this sight.

I was just wondering if you could tell me what are the important questions.  I need to work during chemo is that going to be possible I work at Lowes, I climb ladders, lift toilets on to carts, downstock product.  Financially I just don't know how we will make it if I don't work.  I've been reading your posts and they are so insperational.  Also do you get sick right after chemo I have a 45 minute flight from one island to the other after mine. 

Thank you so much for reading my ramblings I am not normally so whiny.

 

Tethys41

Information

So sorry Bumblebee,

There are so many questions you could ask.  It's hard to suggest them all.  But I would want to know what stage the cancer is.  It sounds, from your description, as if it is stage I, but it would be good to know that.  Also, I assume your chemo will be Carbo/Taxol, but it would be good to know what drugs you will be given.  Again, I assume you will receive 6 rounds, but it would be good to know that too.

You should ask about side effects from chemo.  Typically, you can expect to experience some degree of neuropathy in the fingers and/or toes.  This is a tingling sensation or loss of feeling.  There are things you can do to reduce the risk, but your doctor, most likely, won't recommend them.  If you are receiving Taxol, you will lose your hair.  But there are cold caps available through a number or sources that, although involve a lot of work, will prevent hair loss.  The doctor will give you anti-nausea drugs with the treatment, but you may become nauseated afterwards.  They will give you drugs for that to take if you need them.  They will also give you steroids to take around treatment, and they will mess with your ability to sleep while you are taking them.  You will also need to work to maintain regular bowel movements, drink plenty of water and may have to take some stool softener and laxative.

As far as whether or not you will be able to continue working is a very individual thing.  I know of many women who continue to work through chemotherapy.  I was not one of those.  I could barely function, but I've since learned that I have a genetic issue that prevents my body from detoxing Taxol.  You will have to play it by ear, as to whether or not you can work.  But I encourage you to be easy on yourself and not expect too much of yourself during treatment.  It may cause some financial stressors, but you need to take care of your body and yourself.  The side effects from the treatment generally kick in a day or two after treatment, so you should be fine during the flight home. 

Good luck to you.

 

Bumblebee511

Tethys41 said:

Information

So sorry Bumblebee,

There are so many questions you could ask.  It's hard to suggest them all.  But I would want to know what stage the cancer is.  It sounds, from your description, as if it is stage I, but it would be good to know that.  Also, I assume your chemo will be Carbo/Taxol, but it would be good to know what drugs you will be given.  Again, I assume you will receive 6 rounds, but it would be good to know that too.

You should ask about side effects from chemo.  Typically, you can expect to experience some degree of neuropathy in the fingers and/or toes.  This is a tingling sensation or loss of feeling.  There are things you can do to reduce the risk, but your doctor, most likely, won't recommend them.  If you are receiving Taxol, you will lose your hair.  But there are cold caps available through a number or sources that, although involve a lot of work, will prevent hair loss.  The doctor will give you anti-nausea drugs with the treatment, but you may become nauseated afterwards.  They will give you drugs for that to take if you need them.  They will also give you steroids to take around treatment, and they will mess with your ability to sleep while you are taking them.  You will also need to work to maintain regular bowel movements, drink plenty of water and may have to take some stool softener and laxative.

As far as whether or not you will be able to continue working is a very individual thing.  I know of many women who continue to work through chemotherapy.  I was not one of those.  I could barely function, but I've since learned that I have a genetic issue that prevents my body from detoxing Taxol.  You will have to play it by ear, as to whether or not you can work.  But I encourage you to be easy on yourself and not expect too much of yourself during treatment.  It may cause some financial stressors, but you need to take care of your body and yourself.  The side effects from the treatment generally kick in a day or two after treatment, so you should be fine during the flight home. 

Good luck to you.

 

Thank you

Thank you so much for your help.  The nurse called this morning and it will be carbo/taxol and we went over the side effects.  I also have an appointment to speak with the Dr. before treatment starts so that I can ask him how many rounds of chemo and the stage.  The nurse told me there was no problem with doing it in the vein even though I have had several people tell me I should ask for a port.  Do you have an opinion on that?  I have discovered that as soon as someone finds out I have cancer they either have a cure they read somewhere or an opinion about the treatment I should get based on someone elses cancer.  I know they are just trying to help.  It's nice to find a place where you can talk to someone who really knows whats going on.

Tethys41

Bumblebee511 said:

Thank you

Thank you so much for your help.  The nurse called this morning and it will be carbo/taxol and we went over the side effects.  I also have an appointment to speak with the Dr. before treatment starts so that I can ask him how many rounds of chemo and the stage.  The nurse told me there was no problem with doing it in the vein even though I have had several people tell me I should ask for a port.  Do you have an opinion on that?  I have discovered that as soon as someone finds out I have cancer they either have a cure they read somewhere or an opinion about the treatment I should get based on someone elses cancer.  I know they are just trying to help.  It's nice to find a place where you can talk to someone who really knows whats going on.

Ports and People

Personally, I LOVE my port.  Even though I've been NED for 3 1/2 years, I still have mine and use it to continue integrative treatments.  Your veins can get pretty tough to access in a short time.  I first declined a port, but within a couple of weeks was getting one.  I hope they give you the option.  It will be sore for a couple of weeks after getting it, but it sure makes life a lot easier.

Something to keep in mind, if the cancer IS stage I and low grade, there's another question, ask about the grade, I've heard that it may be preferrable to not do chemo.  I was not in that situation, so can't speak first hand, but low grade cancer does not respond well to chemo.  A second opinion might be a good idea if that is your situation.

You will see a very different side of people you thought you knew.  It's all part of the journey.  I lost a few friends during my treatment, but found some really great, new ones too. 

Alexandra

Hello Bumblebee

Sorry about your new diagnosis.

If your cancer is in fact ovarian primary, low grade and confined to the ovary (stage 1) chemo is usually not necessary. I'm not sure why the doctor was talking about radiation; radiation is not something done for ovarian cancer. I think you need to obtain a copy of your pathology report, surgery transcript, blood test results and get a second opinion from gyno-oncologist. If possible, bring a friend or relative to the appointment.

I don't think that you will be able to do your type of work during chemo unless you ask for lighter duty desk job. Better off apply for long-term leave or disability.

Different people react to chemo differently, but as a rule of thumb, first week after chemo will be the worst and in the following two weeks you will feel better. Right after chemo you will not feel so bad, but may be drowsy from Benadryl and not able to drive. If you have a ride to the airport, I don't think the flight between islands would be a problem.

I declined IV port for esthetic reasons and took 7 rounds of chemo and numerous other injections and blood tests in the arm like a champ. Many people like their ports to save their veins. Totally up to you.

Good luck to you,

Alexandra

lovesanimals

Alexandra said:

Hello Bumblebee

Sorry about your new diagnosis.

If your cancer is in fact ovarian primary, low grade and confined to the ovary (stage 1) chemo is usually not necessary. I'm not sure why the doctor was talking about radiation; radiation is not something done for ovarian cancer. I think you need to obtain a copy of your pathology report, surgery transcript, blood test results and get a second opinion from gyno-oncologist. If possible, bring a friend or relative to the appointment.

I don't think that you will be able to do your type of work during chemo unless you ask for lighter duty desk job. Better off apply for long-term leave or disability.

Different people react to chemo differently, but as a rule of thumb, first week after chemo will be the worst and in the following two weeks you will feel better. Right after chemo you will not feel so bad, but may be drowsy from Benadryl and not able to drive. If you have a ride to the airport, I don't think the flight between islands would be a problem.

I declined IV port for esthetic reasons and took 7 rounds of chemo and numerous other injections and blood tests in the arm like a champ. Many people like their ports to save their veins. Totally up to you.

Good luck to you,

Alexandra

Welcome Bumblebee

I'm so sorry you've joined our "club" but as you've learned, this is a great site to get information and support.  I would reiterate that you want to bring a trusted friend or family member with you to your doctor appointments, if possible.  They should bring paper and pen to write down what the doctor is saying and in fact, I found that it helps to write down my questions ahead of time.  Like you, I was in shock with the diagnosis and it was very hard at first to think straight and to hear what anyone was saying.  My veins are hard to access, so I got myself a port and I loved it.  I had six sessions of carbo/taxol every three weeks, and my experience was that the first day, right after chemo, I was fine.  I really felt the side effects (fatigue, lack of appetite, constipation) the second day and through the first week.  Weeks two and three for me were pretty darn good.  I never had any nausea or vomiting because the nurses gave me anti-nausea drugs just before the chemo cocktail and then for good measure I always took a couple of anti-nausea pills the first evening. Ask for a prescription for anti-nausea pills before the first day of your chemo, just in case. 

You'll probably get a tour of the place where you'll get your chemo.  You may want to bring reading material or something else to help pass the time while you're getting the drugs.  The place where I got my chemo had TVs with headphones set up at each station.  As a TV-holic, I plugged in those headphones and watched TV shows to my heart's content.  I was a happy camper.

Come back often to let us know how you're doing.  Wishing you the best.

Hugs,

Kelly

wholfmeister

Questions! Questions!

Your mind must be spinning since the diagnosis!  I'm happy you found this support board.  The women here have had many different experiences and are willing to tell you how it really is for them.  

Mine is stage 3c high grade.  I had 3 rounds of chemo to shrink my tumors away from my bowels, then extensive debunking surgery, followed by six month's of chemo IV and IP. (IP is through a catheter into the pelvic cavity.). All of my IVs have been without a port, and I did just fine.  Or, I should say, my nurses have done just fine!!  The 6 months IV/IP was followed by taxol every month.  So I've been getting chemo for 16 months now.  Next round is tomorrow.

every woman is different.  For me, it hasn't been too bad.  I have been able to work, but mine is a desk job, not physical like yours.  I do get tired, my energy is low, and it is just hard to think sometimes.  Medicines have kept nausea and vomiting to a minimum. You will likely be sleepy for the flight home, but any sickness likely won't start until the next day or so.  But hopefully, not at all!

One other thing you might ask about is your cancer marker level.  It is a blood test called CA125.  Your nurse can explain the value and expected response to treatment.  

I wish you peace of mind as you begin this fight.  Only the best for you!

poopergirl14052

wholfmeister said:

Questions! Questions!

Your mind must be spinning since the diagnosis!  I'm happy you found this support board.  The women here have had many different experiences and are willing to tell you how it really is for them.  

Mine is stage 3c high grade.  I had 3 rounds of chemo to shrink my tumors away from my bowels, then extensive debunking surgery, followed by six month's of chemo IV and IP. (IP is through a catheter into the pelvic cavity.). All of my IVs have been without a port, and I did just fine.  Or, I should say, my nurses have done just fine!!  The 6 months IV/IP was followed by taxol every month.  So I've been getting chemo for 16 months now.  Next round is tomorrow.

every woman is different.  For me, it hasn't been too bad.  I have been able to work, but mine is a desk job, not physical like yours.  I do get tired, my energy is low, and it is just hard to think sometimes.  Medicines have kept nausea and vomiting to a minimum. You will likely be sleepy for the flight home, but any sickness likely won't start until the next day or so.  But hopefully, not at all!

One other thing you might ask about is your cancer marker level.  It is a blood test called CA125.  Your nurse can explain the value and expected response to treatment.  

I wish you peace of mind as you begin this fight.  Only the best for you!

More answers

Sorry you have to deal with this. Me employer was very understanding and we worked around my chemo schedule. I was in remission for three months only. Then had more chemo and continued to work..then more chemo after nine month remission. I had to go on disability and then retired this year,,,I am now on Cobra. I think you will tolerate chemo and have a long remission as you are younger than me..lol. Have someone go with you for chemo first few times. I have a port and it is great. I also get extra fluids at home to flush away toxins. Come back and let us know how you are. stay strong...Val 

Kaleena

Bumblebee:
 
Sorry about

Bumblebee:

 

Sorry about everything that has been going on.   Did they say you have ovarian cancer?   They didn't think I had cancer but after my hysterectomy, they found it in my uterus and my ovary.   But it was determined that I had endometrial adenocarcinoma.  (Grade 2, Stage 3a). (although they treated it as ovarian)   I found out going back for my checkup after my hysterectomy.   Then they did another surgery for staging. (findings that time negative).    I did do the chemo and I did have a port placed (which I was glad).  I had my port for six years.   If you are getting carbo/taxol it probably would be a  good idea.  By the way, with my doctor, carbo/taxol is the usual starting treatment no matter what grade or stage.

With regard to working, everyone is different.  I was able to work sort of, but usually day two after chemo I would be extremely tired (only good for about half a day before needing to rest).  

Also, you are not being whiny.   

 

Kathy

Bumblebee511

Thank you everyone

I received my packet in the mail today from the nurse.  Chemo is every 3 weeks for 6 cycles.  Taxol and Carboplatin also Zofran/Decadron, Pepcid and Benadryl.  They are going to give me a prescription for Zofran and Compazine.  I am going to ask about a port.  I have horrible veins.  For my surgery they needed an IV in each arm.  Just to get to IV's they stuck 6 times.  I was blue from the top of my knuckles to above my elbow on one arm.  Thank you for your help I have a binder ready with questions for the Dr. and my husband is going with me.  If I understand from the nurse correctly there was no staging done during my surgery because the biopsies that were done during the surgery came back negative.  The radiation will be for a spot on my colon that he did not like the look of but the biopsy came back negative.  Again, thanks for your help.  I did ask if there was anyway it could be wrong with all the negatives I have gotten and she said no.  Hope everyone has a great weekend

wholfmeister

Bumblebee511 said:

Thank you everyone

I received my packet in the mail today from the nurse.  Chemo is every 3 weeks for 6 cycles.  Taxol and Carboplatin also Zofran/Decadron, Pepcid and Benadryl.  They are going to give me a prescription for Zofran and Compazine.  I am going to ask about a port.  I have horrible veins.  For my surgery they needed an IV in each arm.  Just to get to IV's they stuck 6 times.  I was blue from the top of my knuckles to above my elbow on one arm.  Thank you for your help I have a binder ready with questions for the Dr. and my husband is going with me.  If I understand from the nurse correctly there was no staging done during my surgery because the biopsies that were done during the surgery came back negative.  The radiation will be for a spot on my colon that he did not like the look of but the biopsy came back negative.  Again, thanks for your help.  I did ask if there was anyway it could be wrong with all the negatives I have gotten and she said no.  Hope everyone has a great weekend

Same combo that I had!

That is the same combo of meds that I started chemo with.  Only difference is mine was 28 days apart, not 21. The Benadryl makes me very sleepy, so even though I always take reading material, I usually just listen to music, chat, and doze off and on.  I am way too drowsy to drive home, so be sure you have someone to drive you to airport.  That combo of pre-meds does a great job on my symptoms.  I hope it does the same for you.  I take zofran twice a day for three days after, even if I don't feel sick.  That really is the key with zofran...take it BEFORE you feel sick.  The compazine is for breakthrough.  In 16 months of chemo, I have only used it a couple times.  A couple days before chemo, start taking Miralax, even if you usually have good bowel movements.  Take it every night for a week.  Be very intentional about staying well hydrated, before, during and in the days after chemo.

Those are the big lessons I have learned from experience.  Like we have said, every woman is different.  My struggle isn't over, but I feel mine hasn't been too bad, compared to others.  I hope you will do just fine, and since it seems it is just the ovary, maybe you will be done with this in no time!

Pamela B

Welcome Bumblebee!

 Welcome to this wonderful board full of support as you have already seen by the informative postings.  I just finished my chemo and am glad you went for the port.  I have heard a lot of horror stories about the struggles trying to find veins.  Please don't hesitate to ask any other questions that might come up.  These ladies were so patient with my crazy/silly questions and they always answered and supported me. For me, knowing what to expect took all the fear out of it. Going into my first day of chemo felt like old hat since I knew exactly what to expect thanks to the ladies on this site. So ask away and we will answer and support!  Thinking of you and sending good thought and prayers your way.

pattysoo

Low grade? Second opinion

You are entitled to all surgical and lab reports. I always request mine as it helps me understand my disease and pursue internet information.

Are you seeing a gynecological oncologist? If not, you should seek one out before proceeding with treatment. Also, a second opinion would be a very good idea. You have plenty of time to do all of this. Your cancer won't grow that fast. If you were caught at an early stage and it is, in fact, low grade carcinoma, then there are some experts who recommend hormone blockers and monitoring rather than chemo. That would make your life simpler.

Please be sure you're completely healed before you start lifting, climbing ladders, etc. You can feel fine on the outside, but it really does take awhile for the insides to heal. Be patient.

If you do go forward with chemo, most folks feel fine for a day or two after chemo because of the steroids that are administered. I always had chemo on Fridays, was a dynamo of energy on Saturday, felt super-crappy on Sunday and then recovered day by day after that. Everyone is different, however.

I also have low grade tumors. There are some pretty encouraging clinical trials starting. You might keep your eyes open for ones that you could participate in. Go to clinicaltrials.gov

Low grade tumors are similar to some lung and colon cancers.

What's your CA125? If it's below 35 you may want to wait and watch, depending on what the gynecological oncologist thinks.

Hope this isn't too much information. You sound like you are dealing with this quite well. It's easy to be overwhelmed. Good luck.