New to Site - IP Port Advice?

Billie

Newly diagnosed in spring of this year.  Surgery June 25 with complete hysterectomy.  Cancer resided in right fallopian tube and right ovary only so pathology confirmed a Stage II.  Heading to first chemo July 20 - so only 3 days from now. Anxious for sure.  Early 60's and dr quite positive for my long term prognosis.  Offering my the ability for an IP port to wash the abdomen for round 2-6.  Has only used IP port on line?  Want to hear more if so

angel27

I had the IP port treatment at Princess Margaret hospital.  It made for a long day of chemo but best to do whatever you can to conquer this beast. Good luck. Hugs and prayers 

Billie

Angel 27 Thank you for answering.  I am being reminded each person's journey with this will be unique but I read the IP choice causes more significant side effects than IV.  What is your point of view?  Could you still function post chemo or was it debilitating?  Not knowing how long ago you went through this, did IP port choice provide prognosis your dr suggested?

angel27

I finished chemo 3 years ago this past March  surgery was in sept 2016. Just before my 58th birthday  I was pretty much out of commission during my chemo. I didn’t work and would not have been able to. I did have quite a bit of nausea  and was hospitalized for 2 infections  then they gave me neopogen shots which helped  I honestly don’t remember being given a choice really. The IP was highly recommended as being my best chance. And at that point I still didn’t know about the high rate of recurrence. I had 3c high grade serous I think. No problems so far knock on wood  

Billie

It has been offered to me as stage 2 since is not typically offered as over and above to iv and dr said  ultimately my choice. I am intending to still work as distraction as much as anything but have read the port causes some potential over and above issues.  I am very nervous for Monday and hope I can toughen up to get through this. No Choice. I so appreciate your feedback on a Saturday. 

angel27

no problem feel free to contact me anytime or for any other questions.  My chemo brain (still use that excuse lol) will do it’s best to answer. 

Flowergirl

Great you have been able to connect and share @angel27 and @Billie
Sending our support to you for tomorrow

Billie

Thank you. On my way

angel27

hugs and prayers 

angel27

Hope things went ok 

Billie

Thanks for checking in. Port being inserted this Friday. Iv Chemo 1 good and bad so far.  Port will allow therapy to really target and eradicate 

angel27

Wonderful. And remember I’m here to help if you need it!  Will you be doing hydration by ov after each treatment for a few days? 

angel27

sorry sorry to not have checked earlier. Hope port insertion went okay and chemo is going ok

Billie

Too long a saga to describe. Just came back today from having first one removed and then dr nicked my bowel. Now on antibiotics. They want me back next week. Not sure I want to pursue. Hope no infection comes of this or there will be trouble

angel27

Oh my. I am so sorry. You have been thru a lot. Fingers crossed things go better sending good thoughts and hugs 

angel27

Do keep a close watch on your temperature. 

Billie

For sure. On two types of antibiotics. Cant believe I have to about this

Billie

Fingers crossed is nothing. 

Billie

Circling back after many weeks. Last iv treatment of 6 this coming Monday. 

Fearless

@Billie That's great news.  #6 is truly a milestone and hoping you ring that bell loud and proud.  Here's hoping for a good result from all of the treatment.  Please continue to circle back.  

Billie

Dr was quick to point out recurrence rate so could have done with more positive post treatment surveillance message.  See lots of folks on this site where recurrence not happened.  Does not have to be a given.

Fearless

@Billie I guess all I can say is each doctor has their own bedside manner. Some brutally honest about the worst, while they hope for the best. Others leave you completely oblivious to anything you could expect beyond a total cure.  A happy medium would be preferable. I can tell you that I'm High Grade Serious 3C.  Finished first-line treatment in 2017 and recurrence never occurred to me until I was asked to join a focus group about Fear of Recurrence. That was about 6 months after I'd finished treatment and until I went the focus group it never occurred to me I might not be totally cured.  That was the day I decided to do all my own research, learn as much as I could, and make sure I had no new surprises waiting around the corner.  And that also allowed me to sense the actual recurrence I had very very early on.  It's been almost four years ago and I"m still here and kicking.  I know women on this site and otherwise you are survivors of 20 and 30 years. I know women who have had recurrence and then go in to total remission for years and years.  And yes, I know the other too. But fewer and fewer of those now than ever before with so much more research and the introduction of newer and newer treatments.  So yes, recurrence does not have to be a given and if it does occur it also doesn't need to be the end of the world.  Stay positive and optimistic but every vigilante.

angel27

hi Billie. Glad to hear you are almost done chemo. I too did not know about high rate of recurrence til I was done chemo   I didn’t ask earlier or check cause chemo was all I could deal with. Fearless is right best to know so you can be aware. I am 4 years past surgery and in February 2021 4 years past chemo. And knock on wood all well so far. At least you know you did everything you could to battle the beast. Ring that bell!!  Take care 🌻🙏🏻🥰

Billie

Thanks angel27. I rang the bell with high hopes I will not  see inside of a chemo treatment area again. Feeling a bit depleted this weekend as per normal but front line treatment is done. Will get a completion ct in about 3 weeks then do a brca test per dr. Time to get strength back and get on with my life

Fearless

Congratulations @Billie.  How wonderful to have completed your chemo.  Let's hope for a positive scan and that this begins nothing more than a successful journey to recovery.  We're all rooting for you.  

Bojenka

Hi, I am new to this website.

 My journey started when I was diagnosed with High Grade Serous 3C in Feb 2020. 
Had complete hysterectomy, debulking and osteomy in March followed by chemo Carbo/PAC combination from April to October.  I didn’t have bad reactions to chemo and overall got through treatment with only minor hiccups.  Osteomy was reversed in December.
I have had 2 checkups with the oncologist to be told all is well.  

But I now get frequent heartburn after eating, pain in the abdomen either around liver and sometimes in the back between shoulder blades.  My oncologist and GP do not want to do a CT scan saying I should take Tylenol for pain.  I am wondering if anyone else is experiencing these types of pains and aches? Is it normal and could it be just anxiety? 

Fearless

Hi @Bojenka and welcome to OVdialogue and our community.  

It sounds like treatment has been successful so far, other than this issue that has begun to plague you post primary treatment. I can appreciate the anxiety that might cause but it is not unusual to have issues arise as your body goes through the healing process.  If your GP., and most importantly your oncologist,  don't believe your symptoms warrant a CT then I'm assuming your CA 125 is stable and /or your symptoms haven't persisted long enough to feel the issue more than temporary.  So keep a journal each day of what you eat and do and when the symptoms appear.  You may be able to tie it to a specific activity or food that sets it off. Regardless, the journal would be helpful to your medical care team in assessing the problem. 

All of that said, did they rule out acid reflux?  I suffer exactly the symptoms you mention from time to time and have for years.  Cancer treatment did exacerbate it a bit but not enough to change how it's treated.  Sometimes the pain is mild, other times quite severe, but always goes away over time.  I take a daily prescribed medication for it which keeps the reflux under control. The only times now that I get a breakthrough attack is when I'm in chemo or I stupidly eat something  I know I shouldn't.....like Mexican or any other really spicy food. I've also been told by a nutritionist to move my diet to a more low fibre one as high fibre foods can set  off an attack for someone with acid reflux.    

Hopefully this will disappear over time and is an outcome of healing from all of the surgery and treatment which really does take a toll on our bodies.  As I mentioned, track the occurrences and if they continue to persist past three months then, were it me, I would raise it again with my oncologist.  If he/she still believes it's not cancer related then perhaps a referral back to your GP or a GI specialist would be in order.    

Bojenka

Hi Fearless,

I really appreciate your reply and I like the idea of a journal.  Heartburn was one of my symptoms just before diagnosis, although it’s not as severe now, I find it along with aches and pains worrisome.  Someone previously mentioned researching reoccurrence.  Any idea where I could find that information?
  

Fearless

@Bojenka it's normal to have anxiety post treatment.  In almost all studies done it comes up as the #1 post treatment impact.  Much of that stems from the difficulty weaning off of constant surveillance and lessening contact with your cancer centre.  Unfortunately we are not very well prepared to handle post treatment effects, either physical or emotional.

Yes, it is important to learn about recurrence, but I do caution you not to fixate on it.  As long as you have a regular schedule of surveillance check ups, and you know the signs of recurrence to look for you should just focus on healing. 

Where can you learn about recurrence? It depends on the questions you have.  The OCC website is chalk full of information via sharing of stories, videos, booklets like By Your Side and Still By Your Side; especially in the Recurrence section at https://ovariancanada.org/Living-with-Ovarian-Cancer/Recurrence  Their monthly speaker series can be useful depending on the topic of the month.  The fall Symposium Nov 5/6 you would probably find quite valuable. You can get more information on these and other events on at https://ovariancanada.org/Events/Find-Local-Events

And, of course, reach out to our community here with questions or concerns.  We can relate to your anxiety; both those who've never experienced recurrence, and those, like me, who've experienced multiple recurrences. I host a live online chat you might want join. It's every Thursday at 1pm ET and an opportunity to get immediate feedback from the ladies who've joined each week. All you need to do is sign in to OVdialogue as usual, and then click on the Discussion topic Teal Thursday.....to enter the chat room where you're welcome to participate or just observe based on your comfort level.  Love to have you with us anytime. 

Hope this all helps somewhat.  Keep us posted on your progress.  We'll be thinking of you and sending virtual hugs in support.

  

Bojenka

Thank you.
 Yes this is very helpful and time permitting I will join the chat on Thursdays.  
Hope you have wonderful Thanksgiving