Hystology results in

Hi - just wanted to add that when my oncologist was worried about my numb feet and leg pain after cycle 1, she did say that she might reduce the dose of Paclitaxel- or remove it completely, adding that it was the Carboplatin that was the important one after all!  We were on the phone and I did not ask any more, which I regret now, but it begs the question - if it is the taxol that causes most nasty side effects, but the Carbo is most important- what does the taxol actually do?

I see my oncologist next week, I might ask x

Yes, please do ask GwenDot  and I must say on the whole (after three treatments of Carboplatin with three more to go) the side effects have been manageable.   

As I've learnt going along (which may help other people) I don't need the anti-sickness tablets (neither of the two anti-sickness tablets they give me) so I've been told by the hospital not to take them and definitely not the anti-sickness tablets which were causing the awful constipation.  I still take my steroids for two days after my treatment.   

I have bought myself an electric heated blanket to have over me in the evenings whilst watching television in case I'm feeling a little cold or if my legs are aching.  My legs ached at the beginning of my treatment but thankfully no longer ache.   

If magnesium helps then please do ask to see your blood test results to check you are not low on magnesium.  

MrsBJH  I must say I have never felt hot whilst having my treatment, if anything, more a little bit cold.  The heat pack that is used to show my veins is kindly heated up again for me and I rest this on my arm so it's not too cold whilst I'm having my treatment.  

Looking to hear back from you GwenDot  when you find out more x 

Thank you all for your replies, I have to admit it never entered my head to remove the Taxol but then the more i think about it , I don't recall anyone saying it was the Taxol that had caused it or that the Carboplatin was most important. I assume that due to the type  (Serous) the 2 part mix was the treatment needed. The other thing that occasionally plays on my mind, is I havn't had any follow up scans with the dye to check if there is anything lurking about. I did have an internal by the surgeon to check all was well after surgery ( vaginal) and back passage as I have had problems with bowels but all seemed ok to her. I have had telephone consultations with Oncologist but it has been 'how are you' 'have you any problems' 'have you any questions' and a list read out to which I answer yes or no.....It's only now I am talking to you all about it, and writing down my thoughts, I am beginning to realise I don't really know very much at all about the status of the cancer and it's outcome.  I have just sort of kept my head down and 'got on with it'  The surgeon is very positive about it all as she says it was caught at a very early stage, it was contained , and she took a lot away to prevent any risk of transfer of cells. she was so confident she actually said " the oncologist wants to speak to you about follow up treatment I don't know why "...??  sorry for long post but now my mind is working overtime lol.....

Hi nannyjanet. I think you ought to press your Oncologist to see f you'll have a ct scan done. That's the only way they can really see anything untoward. I'd had a year of internal quarterly examinations which were all clear but I felt something wasn't right in my abdomen so was grateful my GP pressed forward with a CT scan to check me out.

We do tend to think we'll be all right to be in control of our own bodies but we're not medically trained are we?

I'd definitely push for a scan with contrast. They don't like to offer them routinely as there is a risk from the radiation bt I think it's a small risk to take vs the other possibilities.

Big hugs, Barb xx

Hi Sarah16.  I had my chat with the oncologist this morning - it was again on the phone, as she has Covid!  
She is going to reduce my Paclitaxel by 20% for my last (4th) cycle, because of my PN in my feet, which, although better, is still causing numbness in my toes and the dizziness.  She said that it is quite common for her to reduce the taxol for the last couple of cycles - or to even remove it completely, in which case she would increase the amount of carboplatin given. 
I was able to ask her why Paclitaxel is included if it causes these side effects and that she had said Carboplatin is the important one - apparently in trials, the combination of the 2 drugs has been shown to give slightly better results.  They usually start treatment with both, but can be flexible depending on the side effects and they try to avoid the treatment causing any permanent effects.  
xx

Hi GwenDot  thank you for kindly providing us with this update. 

I think what has been suggested to you sounds perfect.  In an ideal world we all want to have 100% of the drugs that are recommended to us but if we have a reaction then rather than them removing one of the drugs completely better they just reduce the dosage to see if we can cope.

Can I ask in terms of treatments two and three that you have already had what were you given?  Just Carboplatin due to the PN?  Or perhaps you persisted with the Paclitaxel at 100% too?   

When I suffered from very mild PN after my first chemo I raised this with my consultant oncologist and she did say if this persisted she could reduce my dosage but to first see how I got on after my second chemo and after my second chemo the PN was nowhere near as bad so I'm glad the dosage hasn't been reduced but it's all about what our bodies can cope with. 

I'm so pleased to hear you will receive Paclitaxel (noting the 20% reduction) and the Carboplatin.  Do please come back and let us know how you get on with this.  No hurry to respond re the side effects as sometimes the side effects can take a few days to appear and wishing you all the very best with this treatment.  Also don't forget to drink lots of water a couple of days before your treatment and for two or three days afterwards to help flush the drugs out of your body xx 

Hi Sarah.  I had the combination of Paclitaxel and Carboplatin for my first 3 treatments- the carboplatin was reduced a little for cycle 2, because my blood tests showed some crystallisation in my kidneys, which apparently the carbo can cause.

Annoyingly, although my oncologist had discussed reducing Paclitaxel for cycle 2, it actually went up!!  The chemo nurses queried it and it was because my weight had gone up by 4 lb over Christmas, which pushed me into the higher dose!  They did not have spare, so couldn’t make me a new batch, so I had the choice of coming back the following week, or just having the higher dose.  3rd cycle my weight had reduced again, so I had the same as cycle 1.

I am sloshing in water - they always struggle to insert the cannula, so I constantly have a drink by my side and not a lovely g and t sadly!  It helps flush the kidneys too and I don’t want anything to delay this last treatment - I am really looking forward to it being over and just recovering.

I do worry slightly about only having 4 cycles, when most ladies seem to be having 6.  My oncologist always said 4 right from the start and I questioned her about it this morning and she was very reassuring that 4 was enough.  She had said that she was happy for me to have 6 if I really wanted to, but I must admit that I have had enough now.  I am really ready to stop, so I am going to be guided by her advice and fingers crossed.  Xx

Very interesting hearing what you have posted re your Paclitaxel.  I am weighed just minutes before receiving my chemo and my treatment has already been made up by then.  The day before I have my bloods done but they don't weigh me then.  I suppose if my weight had changed significantly they would change the next chemo in three weeks' time.    

Haha alas yes not a G&T just lots of water.  Do you have a heat pack placed on your wrist to help the veins show a bit better for the nurses?  The nurses struggle finding a vein for my cannula but the heat pack really does help them.  That might be an option if they don't do that already.  

I think you're right to worry slightly re only having 4 cycles and not 6.  Of course your decision whether you have 4 or 6 treatments but you may wish to request just Caroboplatin for treatments 5 and 6.

I can see you want your treatment to end but you might be reaching that decision due to how you have felt after treatments 1 to 3 and you have been over-prescribed Paclitaxel on treatments 2 and 3.  Perhaps see how you get on with both for treatment 4 and see if you could cope with this Paclitaxel at 80% or even consider just having Carboplatin for treatments 5 and 6 if you decide to continue.  

You have said you seem to cope with Carboplatin and and it doesn't have the nasty side effects and it seems to be the one that helps reduce the risk of recurrence but of course the decision is yours and you will make the one that feels right for you xx    

Hi GwenDot. Thank you for asking your oncologist to clarify exactly why we have these two particular drugs together.  I have been really fortunate not to suffer too many side effects from my first two cycles but I did have a reaction to the paclitaxel last time.  It had to be paused while I was give more steroids and more piriton.  My oncology nurse practitioner has contacted me this afternoon and told me to take a cetirizine( antihistamine) tablet for three days before my next chemo. Also the paclitaxel will be the same dose but given over 4 hours instead of three.  It seems like many of us have had problems with cannulas-I drank loads and kept my gloves on until the last moment but it still took two attempts last time.  I know that someone has mentioned a butterfly needle for their blood tests, does anyone know if this butterfly can also be used when inserting a cannula? 

Hi GwenDot and Sarah16

I too am having the Paclaxitel reduced by 20% for my last cycle mostly due to the PN. My Oncologist is also upping my medication by doubling it.

Paclitaxel stops the cancer cells from separating into 2 new cells stopping the growth of the cancer. Carboplatin interferes with the development of the genetic material in a cell, the DNA. This stops it from dividing into 2 new cells and kills it.

Don't forget I've had 6 cycles as my tumours had almost a year to grow after my hysterectomy, whereas you've recently had your hysterectomies so 4 cycle may be sufficient.

This morning I've had  date for my next CT scan on 24th May which will be 8 weeks after my last cycle so if you haven't been given dates for a CT scan press your CNS to look into it. I do have to say my Oncologist is on the ball.

Big hugs, Barb xx