Newly Diagnosed

[PCCDaisy]

Well hello....

My name is Shelly and am 43 yrs old.

Earlier in April got diagnosed with PPC 3C with hardly any symptoms. All I had was a side ache which I thought it was as from gardening/walking daily and gaining some weight. Went to the ER because my GP couldn’t see me. They found that I had asceties which they pumped out 3 litters but couldn’t find a diagnoses after 3 days in the hospital. Passed all organ test which everything was working correctly and no lumps or bumps. Then finally another CT scan which showed lesions on my abdominal lining and also a small cyst on a ovary.

Right away got a port and now just finished my 2nd round of chemo with Pax/Carbo, then after my third will be having surgery for a full hysterectomy and abdominal scrapping - “debunking” and then another 3 rounds of Chemo.

As of today my acecties is all gone, and the only issue I have after Chemo is the neuropathy which gets really bad after day 3 then start getting feeling back afterwards.

So while going thru Chemo do you have pains then the normal neuropathy etc...?

Thanks again for all of your insight. Glad to see something out there for us to talk about what we are going thru and seeing light at the end of the tunnel.

Cheers!!!!

[Lyndy]

Hello and welcome to the club no one really wants to join!

I am glad you are getting the treatment you need. I had a similar pattern 4 chemo surgery and 2 more chemo. Even with your surgery break you will find that chemo is cumulative, so be prepared that the neuropathy may get worse or change as you go along. That said, my first line was very do-able.... so hopefully you won’t have too many problems. Very best of luck with it... keep us posted on how you are doing xx

[PCCDaisy in reply to Lyndy]

Was wondering, did you have any other aches and pains besides the neuropathy while on chemo? And thanks for the wonderful message...

[Lizchips]

Hi Shelly, what I found helps with pain in the joints was claritan but not claritan D. If you getting an immune booster drug after chemo. I took it day of booster plus 4 more days helped a lot with joint pain. Also drink plenty of water. Best wishes for success. Liz

[PCCDaisy in reply to Lizchips]

Thanks for the great advice, have allergies anyway so can certainly change from Zyrtec to Claritin.

[JustKBO]

Hi Shelly. I found chemo to be cumulative. I got joint pain and very fatigued. First week nausea, second joint pain (mostly my shins), third week tired and then I’d perk up ready for the next bout. You seem to be a very positive person so go with it and you’ll manage it. Good luck.

[PCCDaisy in reply to JustKBO]

From my first to second treatment I have followed the same symptoms and around the same time, knock on wood it doesn’t change and get worse. I just think that every time I have a treatment and June surgery that I have less cancer then me then the day before.

[Yorkiepudd]

Hi Shelly

I had surgery first so was well before starting chemo so not sure if that made a difference. I did have some occasional spasm type pains in my legs but not prolonged. Breathlessness on exertion got worse for me and between cycles 4 and 5 the neuropathy in my feet didn’t completely recede so they knocked the Carbo dose down for the final session and also increased the steroids on the last two cycles and I felt pretty good (all things considered!)

Above all, just don’t be afraid to report everything to your medical team as in my experience they want to ensure you feel as well as you can whilst going through this. I kept a chart with my temp on and such like so I could get a sense of any pattern and also found it was easier to take this with me than try and remember! Good luck xx

[PCCDaisy in reply to Yorkiepudd]

Have been keeping a log since the beginning because am the same way like to see if there are any patterns from one treatment to the next. Guess that is the nerd me, but yes it is so helpful like it was for you.

Thank you for the wonder words and thanks!!!

[Supermary in reply to PCCDaisy]

Hi PCCDaisy

I was diagnosed with Primary peritoneum this week after a CT Scan thought it was my appendix

I had my blood work and a biopsy done waiting on results and getting a second opinion PETSCAN Next weekend

I feel ok a little bloated on one side and a pain pressing into right ovary but otherwise I feel ok

No nausea weight change or other things yet

I very nervous and anxious

Any words of advice is appreciated

Everything I read is so depressing

[PCCDaisy in reply to Supermary]

Hi Dear,

Was the exact same way. All my Dr’s told me not to Dr Google and of course I did because we are curious people - well should have listened to my Dr’s. They told me that most people who get this are in their late 70’s and 80’s and 1 out of million get this so there isn’t a lot of statistics on this, plus those #’s are 5-10 years old. They are making new strides daily in curing this. They told me with my age and general good health they me having a long life which I might have some bumps during my journey. But I have read some stories that their are people with long remissions. My mom says that I am going to out live everybody because am going to have labs and X-rays my whole life if they fine one little thing it will be treated.

As of now had ct scan and cancer marker this week before treatment. My starting CA 125 was a 258, then after 2 treatments 41.5 and after my third an 18. Well right before treatment on Friday I got a call and they told me that I didn’t need anymore chemo. I am literally cancer free due to the cancer marker now normal and my ct scan came out clean. So now I will have a debulking surgery at the end of the month to take any suspected looking cancer. The Dr and radiologist couldn’t believe how well I took chemo and how effective it was.

Last year my husband past away due to a terminal liver disease and from that it taught me that life is so short and that you take one treatment at a time. He was diagnosed so late that there was no way he could be fixed. From that it made me go in with my symptoms which I believed saved my life, and kinda sounds the same with you.

I am not afraid to die, but have so much more to do on this earth that I am not ready to go. Keep on telling my late husband 40 more years everyday when I pray.

Today I have a loving boyfriend who has been this thru this with me and beautiful friends and family which am going to be with in the next 40.

Please contact me whenever, it is a scary journey in the beginning but for me it got easier when knowing what to expect.

Hugs are coming your way...

[Supermary in reply to PCCDaisy]

Thank you so much for responding to me

I feel a little better just knowing I’m not alone

I am so sorry your husband passed but it sounds like you have let a wonderful new man

Congrats on that and the good doctor report :)!

I wanted to find women struggling with this as no one seems to know anything and family although well meaning can’t really relate I’d they haven’t experienced it

I should get more news this week and I am praying everyday

God I truly believe for me through COVID this year fought off being incubated and made it out

I have to believe he will be with me through this too

I’m just scared

[PCCDaisy in reply to Supermary]

First I was in shock and then was scared, which we all go thru - just like going thru stages of grief. There is a point for me I just had to shake it off and get on with my “normal” life and take one treatment at a time.

Then I had to tell myself to stop Dr. Googling and find survivor cancer stories which found a lot on You Tube, there is even stuff about how to put on your makeup and watching how fast hair grows after chemo. Just watching stuff like that and seeing that they are currently posting videos gave me hope that this is something you can get thru and live with. There are going to be bumps but there are always new technologies right around the corner.

I too got tested for my genes and was PALB2 positive which I think is like the third cousin of the BRCA 1 & 2. So basically they told me is now they know exactly what to scan and also what treatments will really work for me because what I am lacking.

For me being scared of the unknown was brutal but once having a game plane and going thru my first treatment helped me a lot - could fill in the gaps of the unknown.

Right now I make sure I eat well, exercise and be with family and friends and much as possible. Cancer sucks but the biggest thing I learned is all the love and support from others. Even if is just complaining but somebody is willing to give an ear.

[Supermary in reply to PCCDaisy]

Hi PCCDaisy

I got

My Ca125 it is 370

Everything else on bloods is good

Are you having surgery ?

I’m scared

Margaret

[PCCDaisy in reply to Supermary]

Hi Margaret,

Mine started at a 258, so not that much different then mine. Glad all your other blood work came out good.

Your CT Scan will be the next factor on were it is, guessing you didn’t get the results on that yet. That is the worst part is the wait.

For me this Thursday I have to take the Covid Test because we all have to before a surgery. Then next week is my consult with the surgeon on Monday and then surgery on Tuesday.

I was scared too especially in the beginning because for me it was the unknown. Once I had my first round of chemo it felt like I knew what was going to happen the next times. It all had the same order. Lab, then visit with Dr then treatment.

Yesterday when I got the call I had a bad day, which we all have. Just again the unknown of surgery. I have had little ones due to kidney stones or my port put in but nothing this big. Talked to family and friends which are in the healthcare industry and they explained to me what is truly happening. Today feeling great and ready to take this on.

Hugs,

Shelly

[Supermary in reply to PCCDaisy]

Hi Shelley

You will make it

Through the surgery and come

Out better than ever

I may only have met you a few days ago but I feel as if I’ve known you for longer

You have a tremendous cheerleading squad and we are all here for you

Praying for a quick surgery and speedy recovery

If you need to vent or talk just reach out

You will do great !!!

I have a vain question to ask when In your treatments did you have hair

Loss?

Also I found this site on the internet

No USA sites responded and when they did it was more paperwork

I live in NY 20 minutes north of NYC

When this is all behind us and COVID improves you must visit

I’ve been to Ireland dublin etc but not England or Scotland so Bucket list item for me

Talk later

Margaret

[PCCDaisy in reply to Supermary]

Thank you dear, feel the same way...

Well I am also from the US and live in WI, when searching around forums this was the one that I truly loved and too not that many others especially for the US. How your bucket list included WI...😂😂😂

I had long hair which I was known for. The Dr’s told me after day 14 from my first treatment my hair would be falling out. Ohhh they were right.

For me when I really noticed it and it wouldn’t stop falling I said that is enough and buzzed my head. It actually bothered me seeing my hair fall out then actually buzzing it. Kinda gave me some control on when.

Beanies are my best friend which I bought on Amazon and then also did get a wig.

I am a hands on type of gal and they have a wig shop which specializes for cancer patients her at my home. It was very comforting that if I did go out in public I didn’t get the “look”.

Hugs...

[Eriksendi]

I have PPC diagnosed in May 2017. I had 4 chemos before surgery (due to a bowel perforation after chemo 2.) Surgery in September 2017 and a further 3 chemos. I suffered mainly from joint pains and still do. I had my taxol dose lowered after chemo 4. I always seem to have a pain somewhere but they pass, I think it’s the ones that last more than a couple of weeks we need to check out! It’s a tough treatment but I felt so ill when diagnosed I actually improved after chemo. Days 4-7 after chemo were rubbish but I soon picked up after that. I have been incredibly fortunate to not have had any further treatment yet and I so hope the same for you. Good luck and please ask questions as there are so many ladies on this site who have experience and knowledge of this condition.

[claireRoberts76]

Hello daisy!..my mum was diagnosed with ppc 3c last year she responded so well to chemo (as in numbers coming down fast) but 3 first chemos made her so so ill.... debulking went fantastic and doctors were very happy! 3 more chemos after and she was much better as they tweaked it a little! Her ca125 was 3678!!! now its 5 and has been for 12 months .... praying shes going to be ok now, and praying for you also! Im 43 too ! mum is 72... big hugs x