English Community

I have had a sudden change in diagnosis based on my pathology going for second and third opinions.  I went from endometriod  FIGO 2/3 to high grade serous, Stage 1C2, based on the fact that they had no idea that the cancer was there and so ruptured an enormous ovarian cyst in situ in my abdomen during laparoscopic surgery to remove it.  

Based on the new diagnosis, I am now being offered IP chemo, where the cisplatin drug is delivered directly to the abdominal and pelvic cavity via an inserted port.  The Taxol will still be by IV.   Research shows that this has had better outcomes in Stage 4 cancer, but no research in earlier stages like mine. 

Has anyone had IP treatments?  Can you share your experience with me?  Thanks in advance.

Hi again @marthat - thanks for starting the topic....hoping those that have had IP treatment will be able to share their experience with you. When are you expected to begin your treatments?

Not sure yet.  I still need surgery to place the port and that will likely happen in Dec.  Then time to heal, so probably in January?

Hi @marthat.  I'm sorry to hear about all you have been through and the change in your diagnosis and treatment plan.  That must be very disconcerting and upsetting.  Hopefully some women who have had IP chemo will be able to share their experiences with you.  From what I understand, the side effects can be a little more intense but because the chemo is directly into the abdomen it may be more effective.  I am assuming that part of the reason they may be offering this is because of the burst cyst.  Has your health care team provided more detailed information for you about the treatment?  They usually have a document to handout of some kind that they give to patients.  If not, perhaps you can ask for it.

I had IP chemo last year, in conjunction with IV chemo. A port was inserted under my right rib. Its the cat's meow...just put a bit of emla on the skin and the skin numbs and then the chemo needle is inserted. No pain at all. As far as how it worked? I didn't experience any of the "worst case" side effects they told me about. You feel a bit "full" or bloated, but thats about it for me. No abdominal cramping/pain, etc. But, they learned that if they warm up the chemo chemical before injecting, this cuts down on the cramping. As for did it work? hard to say. I only had 7 months remission after treatment. I was diagnosed at stage 3C so maybe it did buy me time. Maybe recurrence would have happened sooner? No one really knows, right? Would I recommend it? Yes. Every little bit helps is my opinion. 

Thanks for sharing this @dmas125.  @marthat is this helpful for you?

hello @marthat
below from @battleoflife12018 on NOV 21 2018
Hello Marthat
I had IP chemo at Sunny Brook. 
One drug was given regular IV in my arm. The 2nd drug was IP. I  had 6 treatments every 3 weeks. Had my last treatment in August. 
My side effects were feeling tired, neuropathy of my feet. No nausea at all. My blood levels were low, hgb, magnesium, and neutrophils. Had to delay one of my chemo treatments for 2weeks until my neutrophils returned to normal. My levels were low again after my last chemo. Got a yeast infection, took 3 weeks for neutrophils to return to normal. Mag remained low on an oral supplement. 
I still have my porta Cath in my abdomen. 
Will have it removed next week when I have my ostomy reversal surgery. 
I had no problems with the porta cath at all
All the best to you
Sharon

Thank you to dmas125 and battleoflife12018 for sharing your experiences.  It helps so much to hear about real women and their real side effects and experiences.  I see my London oncologist on Tuesday to finalize plans for the port insertion and whether or not to proceed with a hysterectomy (since it wasn't done earlier).  I could be having the port insertion as soon as next Monday.  

Anyone else want to share their experiences?  How long after port insertion before starting chemo? 

Hi @marthat - we wish you all the best at your appointment and thank you for sharing.

(you can use the @ symbol in front of the user name to have those participants receive a notice and perhaps they can post comments on the topic.) Like below:

@dmas125  and @battleoflife12018  

Hello @marthat

I was diagnosed with High Grade Serous Ovarian Cancer, stage 3C during surgery nearly 5 years ago. My IP port was inserted at that time and before I left the hospital I had a PICC line inserted. So I waited 4 weeks to heal before starting chemo - on my 50th birthday! 

I had cisplatin via IP and Taxol via PICC. I did very well (IMHO) on the chemo, which means that the anti-nausea drugs worked. I figured if I wasn't throwing up I was rocking it. hehehe. What ever gets you through, right?

The IP port was taken out after chemo by my surgeon. It was done in clinic under a local during my next clinic appointment. My PICC line was taken out in the chemo suite just moments after chemo was completed.

Fast forward to May of this year, when I went back into treatment with a recurrence. This time around, I had a Port-o-cath inserted in my upper right chest. This was inserted under local anesthetic by an Intervention Radiologist. It was a more complicated procedure than the IP port since the Port-o-cath has to be routed into your blood stream where as the IP is simply into your abdominal cavity. 

I had chemo the next day after the Port-o-cath was inserted. This time around I had Carboplatin and Taxol. A friend of mine just had one inserted yesterday, and she went straight into the chemo suite for her first round!

As to side affects comparison between the Cisplatin and Carboplatin, my experience was that after Cisplatin, Carbo was the gentler little brother. I was less fatigued, less fogged, and had a better appetite. But that is relative. 

Chemo is worse than you can imagine and not as bad as you would think. Truly. You don't just live through it, you can live DURING it. Carpe Diem!

"Chemo is worse than you can imagine and not as bad as you would think. Truly. You don't just live through it, you can live DURING it. Carpe Diem!"

What an interesting statement - thank you for that!  

So I met with my London doc today and decided to go ahead with the full hysterectomy and the port insertion.  It will happen this coming Monday.  Only 5 days to organize my life to be able to drop out of it for a couple of weeks.  And in December, too - oy!!  Such a busy month.  

Thanks for sharing those details @UnPickNot - it sure helps to explain the details and the process.
We will be thinking of you on Monday @marthat

I'm back, minus a uterus, plus a IP chemo port, and with a few new battle scars.  I'm healing up well (now day 17 post op), but I'm having big issues with bladder spasms that started about a week after surgery.  I am taking anti-spasmotic medication, but with minimal success.  They hurt!!!  

And the chemo port was placed up on my ribs, right where a bra strap would sit.  I can't for the life of me figure out how I'm going to wear a bra for the next 6 months...  Good thing that I'm small breasted and that it's winter - layers can hide my bralessness... Anyone with IP port experience have a solution to the bra issue?

Hi @marthat. I am not sure I have a solution to the bra issue but I'm glad you are back on the site.  You have been through a lot but sounds like you are handling things as best you can.  Would a sports bra work or maybe a spandex camisole that would provide a little bit of support?  

Yes, welcome back and we wish you well as you recover @marthat.
Good options @Marilyn - I found some of the soft spandex tank like camisoles are stretchy and have a built in bra shelf -and the straps tend to be soft and less structured - good luck

@marthat
I have had both an IP port (inter peritoneal - where the port ends in your abdominal cavity) which was removed right after chemo was finished, and I currently have a PowerPort (Bard port) in my upper right chest (same kind of access point but the end is threaded into my blood stream through a large vein in my neck).

I say if you can get away without a bra, lucky you! I cannot comfortably be active without something, if only for what we call "nippage".

Did they put the port under your breast along the ribcage - so where the lower band of a bra would go? Once you are healed up and moving, you might try some camisoles that have some strength to them but no bra shelf if that is too irritating. Look up some options on Spanx and LuLu Lemon. Also talk to boutiques that cater to women who have had breast surgery, they have lots of alternative support wear. My IP port was placed in my abdomen which caused issues with my panty waistband until it healed up. So maybe all you need is some healing time.

The incision for the Port in my upper chest took a long time to heal properly as I was allergic to the sutures they used and I was on chemo at the time. Double healing whammy. However, now that it is well healed and I am used to the port, all is good and it causes me no extra irritation from the should strap of my bra. This is good news fro me as the port will not be removed until it fails. 

Give it time, and be comfortable,