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Hi,
I am going to begin IP therapy through via a "belly port" in mid-October. I will receive Pacitaxol and Cisplatin on a Day1/Day 8 schedule every three weeks. I was wondering if anyone has gone through this and could tell me what I might expect. I hear it itsn't too pleasant.
Thanks,
Jenny
MiraLax Cancer Surgery Pregnancy Ovarian cancer Anxiety Carboplatin Taxol Compazine Ativan Decadron Diabetes Breast cancer Pain Weakness Primary peritoneal carcinoma
Hi Jenny:
I finished the whole 6 rounds of this intraperitoneal chemo 15 mos ago and am now feeling great. All the side-affects are gone & have been recurrence-free so far. I truly believe in this treatment -if you're physically up to it. It is a very hard treatment. Day one was no biggie; day two -the cisplatin IP day took about 12 hrs. You take Emend one hour before the treatment begins -(very expensive drug -but incredibly helpful in keeping you from being too sick) then the next two mornings. You will need the 3-pack of Emend with each treatment - hopefully your hospital will give it to you as part of the treatment; if not, your Oncologist should give you a RX for it. This day two is the hardest to come out of; I would be fine till about 11am the next day - at which time I'd be pretty much sleeping for about 24 hrs. Forget about anything passing your lips till day 3 or so. Everything tastes like metal and you might feel pretty sick. You'll also need an anti-nausea to take on top of the Emend. I took Zofran and it helped a lot. I never threw-up - just felt yechy for about 3 days after day two (cisplatin). But, would then begin to feel better on day 3 or 4. The Taxol IP on day 8 was not as bad at all - I tolerated that one pretty well - of course with Zofran. I also found Ativan very helpful - I would take 1/4 to 1/2 a pill on occasion which would help with the anxiety.
Please let me know whatever ques you have; I'm the only one here in Gainesville Florida that has completed all 6 rounds so far. Where are you? I found lots of "tricks" to get thru it all.
Here's one of them:
This is a smoothie my husband would put together for me to keep my counts and weight from falling to low. (Ps: you will need to replace the lost magnesium and potassium and probably hydration after day 2 and possibly day 8 - my Oncologist's clinic would bring me in for this. But after beginning this smoothie routine - I no longer needed it for rounds 5 and 6.
All my treatments were in the hospital in the beginning (I was diag only 5 days after this IP became available) so they wanted to do the protocol. Then, by round 4 I demanded to go home and got the treatments in the chemo lab instead of a hospital bed.
As soon as I got home from day one - usually evening - my husband would prepare this smoothie, then give me another early the next morning - but by 11am or so - that was it for a few days. But, having had at least 2 of them kept my numbers and strength more stable.
1 cup of a good soy milk.
1 banana
good handful of frozen strawberries and blueberries
lots of natural p-nut butter (fresh ground) not from the jar
This smoothie was awesome for me.
The IP did give me lots of digestion problems - let me know what you feel as you go along and I will help with whatever I experienced. I found glycolax was the only med that kept it all moving.
I actually got neuropathy of the colon with the first round and am still battling it - being a complete vegan is how I keep off the medicine.
I don't know your level of fitness; I was a fitness instructor and in extremely good condition and it kicked my butt. Lots of the ladies I helped thru here in Gainesville did pretty well even though they weren't as fit - but only tolerated 3-4 rounds.
THis treatment does extend survival - I do recommend it. I'm 52 yrs old with a 16 yr old daughter I need to survive - she needs me.
What stage were you? Do you know the grade of your cancer?
You will be in my prayers!!!
susan
Hi Jenny,
I had IP therapy after my surgery in 3/2006. I had Carboplatin and Taxol. The Carbo is easier to tolerate and I didn't have nausea... I did have a few days of tiredness.....I was able to finish all the treatments although some were delayed a week because of blood counts. They did give me Aloxi before the chemo which is an antinausea drug that lasts 5 days. You might want to ask about that. It's a great drug. You might ask your doctor about Carpoplatin, too. It's supposed to do the same thing as Cisplatin with less side effects. Alot of doctors are using it. I don't know if your doctor will think it's as effective, but, it's worth asking.
Good luck....keep us posted.....
Barb P
Hi Susan,
Thank you so much for your email. I was diagnosed as a Stage IIIC Epithoneal Ovarian Cancer. I don't know the grade -- will find out next visit with my oncologist. This is actually a recurrence for me. I took taxol and carboplatin (6 rounds) in 2006. I was initially diagnosed in March 2006. I just underwent surgery for a mass under my spleen on Friday, Sept 14. and came home on Monday. Most women don't go through this the "second" time, but I have a very aggressive oncologist. She wanted to place the belly port in the first time, but I had so much ascites it was impossible.
Before cancer, I was a runner -- approximately 20-30 miles a week. After I finished up my last chemo in August 2006, I began walking/running about 3.5 miles - 3/4 times a week. I also lifted weights. I am not in the shape I was in 2006, but I feel I am doing pretty good, considering all I've been through.
I just turned 45 in July, have a 19-year old son who's a sophomore at North Carolina State University and a daughter who's 18 and started her freshman year at Appalachan State in Boone, NC. I live in Durham, NC and go to Duke University Hospital. I feel blessed that I am five minutes from some of the top-notch care in the country.
I am so happy you responded to me! I know this is going to be tough but I am up for the challenge. I read your smoothie recipe to my hubbie and he just loved it. Where do you get natural peanut butter? I've seen peanut butter with no sugar, but it was in a jar.
Please help me get through this. Any tips, tricks. etc, will be appreciated. I have taken Emend , Zofran and have a supply of Ativan. All my treatments are done as an outpatient at the Morris Cancer Center near Duke Hospital. These people are trained oncology nurses and know how to react if a problem occurs.
I'll be in touch and look forward to a long email friendship. I don't know if you've looked at my profile, but the picture is me and my daughter, Emily at HS graduation this past June.
Take care,
Jenny
Hi Barb,
Thanks for your info. I actually have had Carboplatin before -- this is a recurrence, so Cisplatin is what I have to deal with. I appreciate your advice and will ask my oncologist about Aloxi -- that is a new one for me.
Any other advice you can send, please do! I need all the help I can get.
Thanks so much!
Jenny
Hi Jenny,
No other hints...hope you breeze through the therapy.....good luck....I'll be thinking of you and sending prayers....everyone reacts so differently to the different chemos...hopefully, you will be one of the ones who can tolerate it really well...Barb P
Hi Jenny:
I will not only love a long email-friendship with you but will also love to help you thru this treatment. I also sent you an email with my email address - and will be glad to give you my phone number. If you wish to give me yours, I'll call you when you get treatments to see how you are doing. So exciting that you excercise also - that will help you feel much better.
The peanut butter is usually in the deli section of any grocery store - or if not, you can always get it at a health food store. All you're looking for is freshly ground p-nut butter - Publix grinds their own in the deli dept. You just don't want any additional oil or junk in it.
I found the vegan - healthy diet made a huge diff in how I felt. I didn't do it the first 2 rounds and was in bad shape - but felt so much better the last 4 rounds because of the healthy eating.
I was diagnosed in Jan 2006 with stage 3C/ grade3 / BRCA2 - was finished with all 6 rounds on June 16th - and am 15 mos out. I really think you're doing the right thing getting the IP. I don't believe I'd still be in remission without the IP treatment - neither does my doctor.
Let me know whatever you need to know. I'll be here for you through-out the entire treatment.
Are you working?
I am so sorry you've had to go thru so much! This is a monster disease! HOw did you know you had the mass this last time. Did your ca125 rise? We had another lady in our Ovarian Cancer Support Group find a mass also by her spleen recently.
I will pray for you daily.
Love
susan
Susan,
Hi -- so glad to hear back from you. Pardon my ignorance, but I don't know how to get your personal email -- it would be much easier to talk to each other and I would love to give you my home phone.
I am currently on short term disaility from Verizon. I will probably be out at least 6 months with this. Not looking forward to it -- I am a budget analyst but have a wonderful manager who supports me through everything.
My "mass" was found on a CAT scan, followed by a PET scan. It was very small in May, so I was put on Tamoxifen, a breast cancer drug. There was a small chance it would shrink the tumor, but it didn't work. They initially thought the tumor was on my spleen and expected to remove it but it wasn't. My CA 125's did rise -- were 9 in December and over 100 in August.
Let me know how I can get your personal email -- lots more to share.
Take care, my new friend!
Jenny
Jenny:
I was diagnosed with Stage III primary peritoneal carcinoma, i.e. papillary serous carcinoma of the peritoneum, in August 2005. After surgery I did a 6 round chem of Carbo/Taxol ending in December 2005. We discussed IP therapy at that time but determined based on the controversy of this treatment at the time not to do it at that time. At the end of this therapy my CAT scan did not show any indication of remaining disease and I began a 12 month consolidation therapy of Taxol once a week for 3 weeks with one week off a month. In June 2006 I was admitted to the hospital on emergency basis with a Ischemic distal small bowel, i.e. part of my intestine was twisted and gang-green(sp?). In performing this surgery, my gyn/oncologist found that the cancer still remained that she was unable to remove at the time of my initial surgery even though my CA 125 had been below 10 for the past 9 months and the CAT scan had shown no evidence of remaining disease in January As such, based on the January release of the new information approving IP Therapy, we determine to go that route. I was placed on Gemzar/Cisplatin for a 4 round therapy beginning in September 2006. lst day had both drugs and 8th day had Gemzar only. I was worried about the Cisplatin as it was known for being more caustic, but did not have any real problems with it. I was given the Emend and Ativan and had minimal nausea the first round. I worked full time during this therapy with only the Friday off for treatment but on call by cell phone to clients. ( I am an attorney in real estate law). As I had been doing since going on Chemo previously, I was taking daily supplements of magnesium, potassium, B12 and Zinc. My only issue that was new with this therapy was low platelet counts that required continual blood work but fortunately never went low enough to require a transfusion. At the end of this therapy in January, we did a PET scan in February as it was evident that the CA125 and CAT Scan were not reflective of my condition. It showed only a questionable area in my bladder so in March we removed the IP Port that had begun to cause me discomfort and did a cystoscopy taking additional biopsies. They returned showing no disease and was diagnosed as in remission as of April 2007.
Everyone is different, but hopefully this therapy goes as good for you as it did for me. I will keep you in my thoughts and prayers.
I had my first 3 month followup with another PET scan in June and all was clear. Unfortuately, my gyn/oncologist left the practice to return to New York in June which makes me nervous as I really trusted her and she would fully explain everything to me and knew my full history for the past 2 years. The doctor that started the practice, who is renowned in this area, has taken over my case; however, with so many patients I am concerned since the CA125 and CAT scan do not give a true picture for me. When I saw him in June he did not order another PET scan or even the CA125 that I then set up when I had my port flush last month. I I have my 6 month followup next week and will be discussing the future with him at that time. Hope all is still clear.
I am so thankful for my care to this point that has brought me to this stage. I had my first grandbaby on August 24th after my daugther lost her first child last year and was on bed rest for most of the pregnancy this time. What a miracle and delight to be ablel to be present for this wonderful event.
We must continue the good fight and stay positive for the future.
Let me know how it goes and I will be glad to offer any information I can. By the way, I love NC and have been going to western NC since childhood. I live in FL and we are just finally having a little reprieve from the heat this week in the 80' s instead of the 90's.
Best of Luck
Candace
I was diagnosed with Stage IIIC primary peritoneal in June 2006. I was on IP therapy, but had it only three times because the substitute infusion nurses put the chemo into a scar instead of the belly port. The rest of the chemo, 15 weeks, was through the chest port. I had carbo and pacitaxol for all of the chemo. I did not have the IP for 12 hours each time. The day before the chemo I had dexamthasone and the morning of chemo. Afterwards, I took Zofran which worked wonderfully. I might have been slightly nauseous, but never vomited. If I felt nauseous still, I was given prescriptions for compazine and Ativan. They did help. I was also told to use a laxative and/or stool softener because you get constipated. Miralax works very well and does not have a flavor. I did have to have a transfusion twice. I also was on meds for my blood cells.
While I was having the IP therapy, I had to rock back and forth on the bed to circulate it around. It was done on an outpatient basis. My husband drove me to the hospital every week.
Dear Susan and All
Cherries saved my life. Even though the Zofran or Aloxi in my pretreatment helped a lot, it always seemed that about day three I couldnt eat much so I would eat single foods by themselves, ie, a baked potatoe with a little salsa or Girards French dressing, or very little yogurt and frozen cherries. Thank God they always sent a few tablets home with me
You can also get frozen mangoes too. I also used gardenburgers just to think I had something special.
My sister is going on an almost all raw foods diet. Have any of you tried to do this? Remember the cherries! Norma J
Hi Jen:
My email address is: thebookie@cox.net
I sent you an email to your email address - guess you never got it.
My phone number is: 352 316 1250
Emailing or calling each other would be much better.
Let me know when you get this.
I'll also try emailing you again.
Hope you're doing great today. I managed to continue working through-out the entire treatment.
I have a home-based office so it wasn't too bad. There were sometimes that it was a nightmare working while very sick - but mostly working was a blessing. Kept me busy and kept life more normal. By day 3 after IP cisplatin I'd be back at the Y doing modified aerobic classes, walking, biking, etc. That also felt good and kept life more normal. I think it kept the side-affects at a minimal. I thought you did get surgery - how are you feeling? Are you recuped from the surgery yet? When will your treatments start?
My daughter is 16 now and just started the dual-enroll college classes at our community college. She's been homeschooled for the past 9 yrs so this is an adjustment for her. She kind of likes it but would rather come back to homeschool for the next two yrs - we're not letting her.
We know she's ready. How are yours doing in college? Loved that picture of you and your daughter - I'll try to get one off to you of us.
So glad to have you as a friend - let me know whatever ques or concerns you have - I've probably been thru it.
Love to get an email from you - thebookie@cox.net
Your Friend,
susan
Hello Ladies,
I thought I'd weigh in on this topic. I recieved IP treatment as a second round of chemo. I began with the standard 6 of Taxol and Carbo. After my second look surgery I was found to have residual disease and decided to do the IP therapy. I thought it made perfect sense despite whatever difficulties the 'community' was having with it. The fact is we are in the fight for our lives, every opportunity should be explored.
We started with the SOP of 6 treatments, I recieved Vepisid (aka etoposide or VP-16) and Cisplatin. The drugs were alternated every three weeks. On the weeks that I had the cisplatin I went for 3 days of hydration afterwards, to protect the kidneys. After a discussion with my oncologist about treating the disease aggressively we decided to extend the treatments to 9. As I was tolerating the treatments well and the 9th treatment approached we decided to go for 12. I took the 3 days of Emend and Aloxi when necessary, I also had Zofran and Composine at home.
The first few days were uncomfortable, I felt bloated and achy, restless and tired. Some days were actually painful but I took my pain meds and it made life manageable. After the treatment ended I needed to do follow up with an endocrinologist for some blood test results that were out of the normal range. As I get further from my last treatment they are coming back to normal. I do have neuropathy but it is not severe and it comes and goes. I am still plagued with fatigue but it is far better than the alternative. I also have a strange side effect of itchy skin. I know that my husband would tell you that I was more uncomfortable than I am saying but as I remember it I was able to get through 12 treatments and I think that speaks for itself.
We all have different levels for tolerating these treatments. Each drug comes with its own set of side effects. The bottom line for me is being able to find a treatment that I can comprehend and allows me to continue to live my life.
Happy to answer any questions.
Be well,
Lily
Hi Lily,
You were in the same boat I am in now. This is a recurrence for me -- had surgery last Friday and my oncologist removed all cancer. So as of now, I am cancer-free, just need to get the chemo through the port started. Do you have any special tricks or diet that helped you through this? I am practically a vegetarian and don't eat red meat (maybe twice a year). I do like fish and chicken, but what I am reading (from all the posts above), it seems like veggies, potatoes, garden burgers, fruits and yogurt seen to do the trick.
Any thoughts on that?
Thanks,
Jenny
Dear Jenny,
I admire your spirit. You sound as if you are very positive and in my opinion that is paramount. To be perfectly honest with you the advice I got was to treat myself. There is concern for cancer patients and weight loss. For me that was not the case. Going through menapause simultaneously caused me to gain weight. I was told repeatedly not to worry about it, and to eat a healthy diet. When in doubt, eat what you enjoy. So I went for the comfort foods. About 6 months after my last treatment I started to lose the weight. I also have diabetes so it adds another factor to my situation. I wish I had some words of wisdom on this topic but again I feel it has to do more with what you believe will make a difference then what anyone else may recommend. Although admittedly there is great wisdom we have to share with each other. Good luck with the treatments and feel free to send me a note any time with any questions or comments you might have.
Be well,
Lily
Hi Susan,
Haven't heard from you -- sent you an email last night to your personal address. Please let me know if you received it. Would love to hear from you.
Take care,
Jenny
Hi Jenny,
I hope this info helps quell your fears. Please email me any time if you have questions or just want to talk as you're going through this: lmgreene@hotmail.com. I'd like to stay in touch.
I underwent six rounds of both IV and IP chemo of taxol and cisplatin last year and I have to say, while it wasn't pleasant, it was not nearly as bad as I'd feared. I gather that the cisplatin through the port is the harder to handle - stomach and leg pains, nausea, diarreah, and of course the overriding fatigue and weakness. The top of my tongue was numb and tingly and my hands and feet got increasingly numb and tingly. I finished chemo August 2006 and my feet are still a little bit numb, but in the big scheme of things, who cares about the underside of one's toes and balls of the feet being numb? You have to put it in perspective - I'm healthy now and feeling great and feel extremely lucky! My CA-125 level is still in single digits, so that's great. I never had to delay a treatment for low blood count issues. I gather sometimes when one takes carboplatin rather than cisplatin, that may happen, although the carboplatin is easier on the nausea end of things.
Did my hair fall out? Yes, every drop on my body. Losing my eyebrows and eyelashes bothered me more than losing the hair on my head. Between that and the steriod face you get from the Decadron, your face looks sort of funny - like a cabbage patch doll. Not having to shave my legs all spring, summer, and most of the fall was nothing but a bonus! I used Johnson's Baby Wash head to toe, and would be out of the shower in minutes!
I got a couple really great wigs, but didn't wear them nearly as much as I thought I would. I more often wore a bandana or scarf. I actually felt quite victorious walking around with my bald head!
In terms of nausea, I took Zofran and also got a prescription for Emend part way through when the Zofran wasn't holding the nausea down as well as it had been. I set my alarm and took it around the clock and a little closer together than directed, just to be sure the nausea wouldn't get too far ahead of me (like every 7.5 hrs instead of the directed 8). Did I still vomit? Yes, but not uncontrollably or constantly. That Emend was a lifesaver.
Things tasted funny and I completely lost my taste for coffee - and I'm a coffee addict! I could smell the chemo when I went to the bathroom and it also smelled like it was coming out of my pores - I don't know, but I could smell it all the time and it wasn't pleasant. Apples, applesauce, watermelon, potato chips and brown rice were the things that tasted good to me. I drank a lot of water, and also gatoraid - something I'd never drunk in my life, but it tasted good to me and helped replace electrolytes and whatever else.
The worst part of the IP chemo was the difficulty the medical staff had in accessing the port. Stab, stab, stab - oops I missed, oops I hit the side, oops I don't think it's in... ugh. On the other hand, they were pretty nervous too, and it all worked out fine. I was the first IP chemo patient my hospital had in 12 years, so it was a first for all of us!
Other advice - think positive, be positive, surround yourself with positive people and things, look at the beauty all around you and enjoy it, and use this time to purge all the emotional garbage we tend to carry around with us. I think attitude has a lot to do with successful treatment.
Please don't hesitate to email me back - whether on this site or just directly.
Take care and I'll be thinking of you. Best wishes for a successful journey!
Lisa
Hi Susan
I read your description of chemo, wow! i will have my first taxol/cisplatin chemo on 2/27. I am going to the health store to get the ingredients for the smoothie. I feel so much better after the surgery. My stomach looked pregnant with that large tumor inside.
How are you after the first year? i hope everything is going great for you. i will keep you posted.
stage 3b
Bea
Hi! Thanks for sharing, starting IP Chemo next week with taxol and Carboplatin. Did you have any issues with bloating?
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