Experiences please.........

[Sueg8r]

So I have just finished my 3rd Carbo/Taxol treatment of 6 for Stage III-C Ovarian Cancer, which has also spread to my Omentum. Until the past week or so, I wasn't really having very many unpleasant side effects. However, recently I've started having a serious "ache" in my entire abdominal area (on & off all day- keeping me up at night), severe loss of appetite and epic hot flashes all day and night, that leave me soaked. I know the hot flashes are due to having my ovaries removed and that it's fairly normal. But, has anyone else had any of these other symptoms? If so, what has helped and how long did they last?

As of this point almost all of my hair is gone. My lashes and eyebrows are starting to go away. I've noticed a more "sick" look to my appearance now. Paler looking skin and darker circles under my eyes. It's really starting to get harder for me emotionally & mentally because the cancer that used to be "hidden" on my insides, is making it's presence known on the outside.

Any suggestions to help with any of these side effects............would be greatly appreciated. I'm starting to feel "bummed" and for me, talking about it- especially to others who may be feeling or have felt similar, helps tremendously.

Thanks so much in advance!!

Suz

[Annr5h]

Hi Suz, can't say I had the hot flushes but I am 64 so I'm over that now. I'd mention the pain to your clinic nurse when you go for treatment or your oncologist.

The side effects do build up the more chemo you have, but fortunately your halfway through now so try to be positive as I did. I remember thinking if it's doing this to my skin and hair it's killing off the cancer.

Once your over the next couple of months and finish your chemo things will get better and so will you xx

[Shire62]

Hi Sueg8r,

Well for me the pelvic aches and pains were there off and on throughout my chemo ( just completed my 6th yesterday 🎉🍷🍾)... there is a theory that the dead cancer cells collate within the pelvic area and this could contribute to the pains. You will see from various other comments on here that lots of us complain about this I'm afraid!!

I also suffer with the night sweats plus hot flushes off and on throughout the day, I've passed my ' normal ' menopause , so this is down to the chemo I've been told.. Do mention this to your oncologist or nurse , but I'm sure they will say it's part and parcel of the journey!!

Much love ❤️

Jackie ( if it's any comfort I'm having a hot flush now whilst writing this at 4.30 am !!! Oh the joys!!! 😅 Xx

[Hidden]

Hi Suz. I know it's a bugger of a time. I well remember what it was like to be completely hairless. I recall walking thru the house & suddenly, without warning, my nose would drip onto the floor - no nasal hairs - we just don't realise the work such small things do for us. I too was looking at myself & didn't recognise myself - I think it's the lack of eyebrows. My eyes turned a darker colour too. I thought I looked a freak. I too was stage 3c. I didn't have all the symptoms you're describing but we all react differently to these drugs but do talk to your onc (or similar) about what you're experiencing.

My best advice tho' is to try to stand back and see the bigger picture. I'm now 5 years on from then. In my 2nd remission - didn't lose my hair the 2nd time. I am well. People tell me all the time how well I look. I feel so well that I often feel as if I'm a fraud.

Good luck. Pauline

[Hairlessbeauty]

Hi

I believe that you are having tough time now, but you will get better. I was there n 2015. You can read my story on my blog here: hairlessbeauty.ie/my-story/

I was clear for 12 months. Now I'm fighting again. But it was a time a felt very good after finishing treatment and I felt really good. We are strongly ladies, and we have to fight. At the end there are a good things.

Best wishes and hugs

Zaneta, xx

[pishi1]

I still get hot flushes from time to time during the day and sometimes get warm during the night. I finished chemo last May. I must admit I am fed up with it and find it draining as I don't sleep well. I am now drinking decafinated coffee and have found that has helped. Best wishes to you. X

[jdillon]

Hi Suz!

You are certainly not alone! I am 49 and also Stage IIIc and had a complete hysterectomy along with some omentum removal. I lost my hair 21 days after my first carbo/taxol treatment. Actually....it started falling out so much I just had it shaved. It was like just pulling off a bandaide quickly instead of trying to be slow and gentle.

I, too, suffered from abdominal discomfort for the first 4 rounds of treatment. Partially because that is one heck of a big surgery and then they also discovered ascites (fluid in my abdomen). I had to have that drained 3 times during treatment, but felt markedly better.

The hot flashes and night sweats.....ugh! Mine 'heated up' around round 3. I am currently taking Black Cohosh (recommended by my oncologist) to help the symptoms. While it doesn't take them away......it really reduced the severity for me! I'm no longer going to burst into flames or wake up in a puddle. They are just short, quick episodes now and not as frequent.

I would definitely talk to your oncologist about your specific symptoms and see what can be done. I do understand how at first everything is 'ok', but once you start to look sick it can feel embarrassing. I felt the same way. I could handle the diagnosis.....I just didn't want to look like it. Crazy, right?!? I don't know why we would feel embarrassed. we didn't ask for it and we would certainly give it back if we could!

I have a great wig for the hair part of it. I tried hats and scarves, but to go out into public I didn't feel comfortable. I also used a bit of eyeliner to help define my eyes. If it was a really special occasion I would do some fake eyelashes, but mostly found those were a pain. I had lost so much weight (down to 100 lbs and I'm 5'6") that I looked like an anorexic. My face was sunken in and it was hard to look in the mirror some days.

Somewhere between rounds 4-6 things turned around. I continued to force feed myself and the weight eventually started coming on and my energy returned. I can honestly tell you that early on I was bothered by my appearance until I went out and faced people I hadn't seen since the diagnosis. Once I felt the love and concern everyone genuinely had....It never bothered me again.

I completed my taxol/carbo November 1. Unfortunately, my CA125 never normalized and there is still some slight fluid in my abdomen (indicating signs of the disease). This all points to being platinum resistant so they started me on second line treatment of avastin/doxil. I will be on that through May. The good news is my hair is coming back. My eyelashes are thicker than ever!

It's a process! Focus on the beauty inside. Hugs!!!

Jodi

[Hidden]

Hi Suz

I had the same chemo regime as you during 2015 - I hated that I looked grey and the tiredness, I would sleep for 12 hours at a time. My treatment team did change the chemo dose and give me blood to help me through, so do talk to your team about your symptoms and how you feel because they can help you. At our unit there are sessions on "health and beauty" for cancer sufferers - maybe there is something like that near you.

You are nearly there. I crossed the days off a calendar which helped and just tried to celebrate small achievements ... a short walk, a successfully completed suduko, a cup of tea with a friend.

Sending you lots of positive thoughts and best wishes, Dawn xx

[Heatherslade]

Hi Suz. Sorry you are feeling so rough. Just finished same regime 2 weeks ago after diagnosis of 3C last August after major op for bowel cancer which involved removal ovaries fallopian tubes etc and omentum. I list all my hair despite trying cold cap but have some amazing wigs and one or two hats so its no problem. Going to have a permanent eyliner done next week to help till eyelashes grow back. Yes had some stomach pains but as had awful constipation I put it down to that more than anything. Worse things I found were the joint pains for the first week after chemo and of course the neuropathy. Did struggle with eating as taste was affected by the chemo but pushed myself as its important to keep your strength up. Like one or two others if you are getting side effects its working and doing its job. Its a mean to an end. Keep positive, you will get through. Lots of hugs x

[caf132]

Hi Sue-

Defiantly talk to your ONC team about your symptoms. A lot of aches and pains pop up with the chemo treatments. Chemo is cumulative so the later treatments tend to be a bit harder on you. I was at my lowest when my eyelashes and brows started to fall out. There is a class called Look Good Feel Good offered free of charge in the US through the National Cancer Institute. I would highly recommend it. A lot of top makeup lines donate excellent products for the chemo patients with instructions on uses. Just call them and find a class in your area. You get a lot of free makeup. Makes you feel good and gives you a chance to try other lines.

You are half way through your treatments YAH! You are a warrior! The side effects are awful but they will go away after you finish. Do you have any neuropathy in you feet? You may be really fatigued from low blood counts but you can combat that. Don't refuse a blood transfusion if you need one. I resisted it for weeks but after I had it I felt great! i did a weeks worth of work in one day!! I gave myself Neupogen shots at home for low WBC counts, kept me at home and not exposed to sick people.

Please keep us posted on how you are managing.

XxCarol

[rppizio]

Sure sounds like the cumulative effect has hit you, it also hit me on my 3rd one as well. On the up side we are lucky enough to be able to get help in getting past this stage with help from our Dr's and other support organisations. "Look Good Feel Good is a wonderful class to attend for so very many reasons... To be in a room full of women at all stages of cancer and seeing that it is important to all of them to look good and not give in to cancer.. was a wonderful turning point for me. I actually have a couple of now good friends that we stay in touch with each other from that class. The importance of routine and doing make up is top quality and the classes are usually held by long time survivors and they share their insights and tips/shortcuts to reserve your energy for the fun stuff.

For me personally, while being bald and no eye lashes and eye brows etc I took several pictures of my face so that I could be reminded of how far I have come... and on those days that I get frustrated, it doesn't take long to realize just how far I have come...

I have often heard people say some of their most " ah-haw moments or light bulb moments" about what is truly important to them and to make those needed changes or "unfriend" people that drain you instead of holding you up happen when you are at lowest. For me there was so much truth revealed to me while I was stripped of skin deep looks.

I had a wig and several hats that I wore all the time... then one day the wind blew off my turban & hat and my friends said I looked just fine with out them... and from that point on no more hats etc.. it was very freeing to just be myself. It's as if we are hiding from the ones we love that we don't want them to shun us, it is exactly the opposite. They are relieved that we not hiding behind hats and scarves... it's like we are approachable again.. can't really explain it but for me, it has been a wonderful experience to get to the other side of not having a full head of hair etc. Now I feeling more like Annie Lynix with my hair, LOL.