Anyone has been on Paclitaxel on its own and cyst

[dieneke]

Hello lovely ladies

It is still quite a bumpy ride,diagnosed last February, Had paclitaxel/carboplatyn last year. CT showed stable, but no surgery and by February 2019 cancer seems to get back - with a cyst developed in the ovaries where the tumor is as well. so on carboplatyn and caelix. Just had my ct scan after 3 months. Cyst grew from 10 cm to 17 cm, although CA 125 throughout all this has been relatively stable and latest count was 37. They diagnosed acute diverticulitis so was also given antibiotics cure for a week. Meanwhile I read an article that cysts can be caused by diverticulitis. So yesterday I saw the same registrar again. He said:

cyst is cancerous - they reviewed ct scan

they offer operation but can't guarantee that I won't have a stoma

starting on paclitaxel, weekly chemo intravenously and one week off.

Questions I have:

Has anyone been on paclitaxel?

has anyone had a cyst and what did you do? Has anyone had an operation?

Thank you so much.

Dieneke

[Lindaura]

Dear Dieneke,

So sorry you have to have all this pain and worry.

I can’t understand why you did not have surgery last year.

But oh well.

I have never had a cyst, but like most of us here, had surgery to remove ovaries, uterus, the works.

Before every operation of this nature, they warn you that you could end up with a stoma, but only a few have this happen and often it is reversible after recovery.

My surgeon was pretty certain I wouldn’t need one, but he did not rule it out.

I did not need one and I recovered easily from the operation.

The first 5 to 8 days are difficult, but the pain relief is wonderful and then you start feeling better after the eighth day.

Weekly Taxol is a lot easier to tolerate than Carbo/Taxol, but it means weekly visits to the hospital...

Hope this helps,

Laura

[dieneke in reply to Lindaura]

Hello Laura

thanks for sharing that. The reason why I didn't go ahead with the surgery last year was that the head surgeon who was going to do the operation and saw me, started the conversation with telling me that I was an extremely difficult case and i should not be operated really. So I went in the defence. Without explaining he then said and we don't know what we have to take out so you have to be prepared for everything. And because I did want to operation I said yes. My carer and friend wasn't with me, and when I phoned him after the appointment and started to react and was really scared as he had not explained everything. So I managed to get an appointment with him and my carer was there as well, when actually I should be seeing the nurse. He then showed the CT Scan and the location of the tumor near the rectum. At that point I looked for an alternative whilst also having another round of chemo to see whether the tumor would shrink and be less near the rectum. It really is a matter of how they tell you. I never trusted him, also when I started looking at the way surgeons operate and I suspected he was of the school of thought of better to take more out rather than less. Also he never explained to me that the stoma could be temporary - and I still don't know. He seemed to indicate permanent...

Dieneke

[BeeWild]

Hi sweetie so sorry you find yourself in this place. I had surgery in 2017 after diagnosis and did end up with a stoma (colostomy) to be honest it’s not what I would of wanted but it saved my life so I don’t stress about it. It’s not been too problematic for me but hopefully you won’t need one.

I have also had weekly taxol and it’s very manageable and I carried on working part time throughout. After half way I got a little more fatigued and some neuropathy in my feet but that’s fully resolved now. I also did the cold cap so kept my hair!

Good luck with your treatment and any concerns or questions just ask

Sending hugs

Bev xx

[dieneke in reply to BeeWild]

Thanks Bev for sharing that. Yes I know if you really need a stoma, then so be it. A friend of mine had one and it is a matter of getting used to it. What I objected to is not being explained and making it look like the stoma is almost inevitable

Best

Dieneke

[Di16]

When I had surgery 2 years ago, I was told a stoma was very likely on this occasion, & there were a couple of ladies in the ward who did have stomas. I was seen by a stoma specialist nurse who discussed with me where on my abdomen it was to be. But it wasn't necessary after all. They have to warn you of possibilities & risks, but these things often don't happen. It's normal to be anxious about surgery, but it's surprising how soon you start to recover.

I've also had weekly Paclitaxel, & found it the easiest chemo I've had. Di

[dieneke in reply to Di16]

Thanks Di

Yes it should really be well prepared. I wasn't even told about the stoma, nor had they planned for me to see a stoma nurse. It was just very bad preparation and it still scares me..

best

Dieneke

[Cropcrop]

Hi Dieneke, I had a 30cm cyst on my left ovary which encased my clear cell carcinoma. It was stuck to most of all the ‘bits’ in my pelvis and in particular my bowel. I had surgery to remove the cyst, they also removed my omentum and appendix. I was told beforehand that a stoma was very likely due to the cyst being ‘glued’ to my bowel and that a resection was highly likely. I was so lucky in that I woke up after the surgery without a stoma, they do try not to create a stoma unless it’s totally necessary and in many cases a stoma is reversible. They have to give you all the possible scenarios so the surprises are kept to a minimum, obviously until they get in there they only have scans to refer to and things can change.

I had my taxol weekly, it was fine really (I also had carbo every third week but the taxol weeks were really doable)

Surgery is scary but without it I literally wouldn’t be here today as the cyst burst during surgery and my surgeon told me he got in there just in time so if they are offering you surgery with the taxol if I was you I’d go with it, in my opinion it’s your best option.

Good luck with whatever you decide to do, please let us know how you get on. ❤️Xx Jane

[dieneke in reply to Cropcrop]

Hello Jane

Wow that is even greated than mine which is 17cm and the ct scan also shows that it covers the bowel. Good to know that it doesn't immediately mean that you end up with a stoma.

Great your experience with taxol. In hindsight in my case I don't think it works. I am neutropenic so have to inject each time as the white blood cells are too low. The hospital pharmacy is very iniefficient and they have no procedures for cases like mine...

Best

Dieneke

[thomas62]

Hi dieneke,

From my research over the last few years, I believe cysts are often precursers to a cancer. This is, I believe, how my low grade cancer originated. I don't have diverticulitis at all. I agree with Cropcrop, surgery and taxol if that is at all possible. Before my 2nd surgery I was pre-warned I might need a stoma but they managed to do a bowel resection instead. They have to warn you of this possibility because they do not know 100 per cent what they will find until they open you up. Often a stoma is reversible post op. Best wishes. Gwen

[dieneke in reply to thomas62]

Thanks Gwen

Interesting that you think a cyst is a precursor to a cancer. That is what I thought as well. Hence my theory of diverticulitis... Good also that as the others a stoma can be reversible. The surgeon that would do it never have spoken about this.. very bad.

Best Dieneke

[roshropshire]

Hi there,

I was diagnosed stage 4 Ovarian in 2017, like you i had carboplatin & paclitaxil and after 3 sessions had op to remove cyst which wasn't responding to treatment. They were also supposed to do a hysterectomy but couldn't because of damaging my bowel.I was also on Avastin which carried on after I finished the chemo but after 6 months was no longer effective. I had further chemo with carboplatin/caelix which kept it at bay but didn't improve my situation. My best way forward (which I pushed for) was a clinical trial and I at last was offered Octova. I could have gone along the paclitaxil route but was assigned oliparib and a new drug. After 6 weeks on these tablets I'm responding well and will have to wait for the next CT scan in 2 weeks time to get full results so far. Feeling like my old self more and more, biggest problem is tiredness, this may also be caused by lack of sleep!

Hope you improve soon. Ro

[dieneke in reply to roshropshire]

Hello Ro

Thank you for sharing that. Very much in line what I am thinking. Some chemos work with some people and other chemos don't. So the issue is to find the right chemo and search for the best one or clinical trial. Well done you for finding the right one for you. You must be so pleased. And it is great to know that there are other chemos out there that could work. My thinking at the moment as well

Best

Dieneke

[Ruqys]

Nab paclitaxel instead of conventional paclitaxel is better to avoid many side effects like nausea, vomiting