Stopping at number 5 ( out of 6)

[Janet235]

I haven't posted for awhile, I wanted to get to the end of the Rotterdam regime... ( of weekly cisplatin and etoposide tablets) or as far as I could...

Well today was decision day. I could have had the last one tomorrow but I am not putting myself through the wringer one more time as it seems it has done its work. My CA came down over several weeks from 4000+ to 116 and amazingly my bloods are still all ok, with immune system holding up... no other major health issues.

But oh boy has this been a tough one.... I feel it is going to take sometime before my body gets back on track. My feet and fingers are now virtually numb with neuropathy, I have lost a lot of weight and muscle mass, my stamina, strength and energy levels are knocked for six and the constipation has been chronic

However the reward is a trip down to Hampshire tomorrow for a few days to stay with our son and wife in their lovely new house ..we shall take it slow and easy on the way down and hopefully the weather will stay warm and sunny ( I feel SO cold all the time.) and relax in a different environment.

Scan end of May and hopefully a better window of remission

Take care all you ladies out there going through the chemo mill

Janet x🌈🌼🤞🏻💓

Ps in a week's time I have made my two year anniversary of living....

[January-2016-UK]

Hello Janet, I see you've got your logo back.I knew the other posts were you because of the rainbows.

You've done so well to get almost to the end, especially as you started the regime before you'd completely recovered from weekly Taxol. The CA-125 drop seems remarkable. Ask your GP to check your blood levels as I've heard low magnesium can make you feel cold all the time and doubtless lack of other minerals / vitamins can have the same result.

Enjoy your trip down to Hampshire. Relax and build up your strength.

Take care. Helen

[Janet235 in reply to January-2016-UK]

Thanks... yes I will check on the magnesium, though most days I do drink the fizzy multi vit which has to have magnesium in I would have thought.

[Nicky100 in reply to January-2016-UK]

Hi Helen, how are you doing? And Helen, she is right.. this is a remarkable result. You might feel hammered but you did it.. and this is a great result. Long may it last xxx Nicky

[January-2016-UK in reply to Nicky100]

I’m doing well. Waiting to be rescanned early July as still insufficient disease to go on a trial.

[Nicky100 in reply to January-2016-UK]

Sorry to hear that. I hope they find you a trial.

[harpist_UK]

You've done really well, Janet - those numbers are impressive. Now let's just hope you can build yourself up and have some treatment-free time. Are you continuing with the Etoposide tablets? It was mentioned to me that I could if they were working. I'm not sure if I'll get back on the Rotterdam - still being investigated for bowel infection/bleeding and now going to have a colonoscopy before we proceed. The last 4 weeks have been my toughest since diagnosis!

[Lizz49 in reply to harpist_UK]

Sorry to hear you’ve had a tough 4 weeks! This OC lark isn’t easy is it, I just wanted to send you virtual hugs and lots of luck for your colonscopy and ongoing treatment Xx 💖

[harpist_UK in reply to Lizz49]

Thanks, Liz. I had a pretty straight run up until late last year, but this year I've learned to be very adaptable! You're right, it's not easy and requires so much admin too - I now have a lever arch file of disease history x

[Janet235 in reply to harpist_UK]

I will finish with the tablets tomorrow, then have a break, but most likely resume as a maintenance for as long as I need.

Oh dear - a colonoscopy, the one thing I would dread. I was given some glycerin suppositories and couldn't even manage that 😳

I wonder what's next for you... x

[harpist_UK in reply to Janet235]

It's not so much the colonoscopy as the prep drink... I had one on diagnosis as initially they thought my OC was a bowel problem - consultant 'was confident it was just diverticula' haha. So I know what to expect. I'm not allowed to eat much the previous day and as I get grumpy without food I'm not sure how this will go. The bleeding could be from the chemo, the infection, the diverticula or the cancer, so they need to look and be sure before they consider treatment. Onc did say that if we couldn't proceed with Rotterdam it would be hormone therapies.

[lynn6156 in reply to harpist_UK]

I have Crohns disease so had quite a few bowel investigations - I hate the prep and no food too. Last time I ate jelly - something I wouldnt dream of normally but it kind of kidded me into thinking I was eating something solid when really it's not. As opposed to say, clear soup , which is more obviously not solid.

....Maybe that would help?

Lynn

x

[harpist_UK in reply to lynn6156]

Oh yes, bring on the jellies

[CynD in reply to harpist_UK]

Hi Harpist! I'm with you on the prep! Yikes! When I was 1st diagnosed they thought I had terminal colon cancer, then realized that I also had ovarian cancer. My Acities was so bad prior to my 1st colonoscopy that I literally couldn't get more than a swallow into me. I didn't know anything at that point and I remember calling the doctor's office because I was afraid that if I tried to get down all the prep I would physically explode - that I might actually damage myself and burst open. I looked like I was about 12 months pregnant with twins. It was horrible. I've had 3 more in the past year and one coming up in less than a month. I also have a visit to the GynOnc this Tuesday to see if I get to go in the 2nd 3 months with an all clear. Like Liz49 said, this just isn't an easy ride under ANY circumstances. Even the good news is tainted by the worry of "but for how long?" I'm sorry you've had a rough 4 weeks. I'm pulling for you, praying for you, and always here if you need a chat!

Hugs and love!

...Cyndie

[harpist_UK in reply to CynD]

Hi Cyndie! I too had a colonoscopy before being diagnosed with OC as they thought I had bowel cancer (my mum did), but fortunately it was before my ascites. I can remember not wanting to eat or drink a lot at the time though - it was that always feeling full feeling. All the best to you, and thank you for your kind and empathetic thoughts. I am seizing this treatment-free week to have a few days in Scotland, hoping I can switch off my brain from thinking about hospitals and cancer - we need to work at looking for the healing things outside hospitals in my opinion! Christine x

[CynD in reply to harpist_UK]

Hi Christine! Off to Scotland, eh? Well from my perspective here in the US that sounds l) incredibly amazing, but I forget that if you're in the UK it might be more along the lines of me traveling to Louisiana! I hope you're able to successfully switch off for awhile. Living in cancerland, while rarely dull, can get pretty tedious after awhile. I'll be thinking about you!

...Cyn xx

[harpist_UK in reply to CynD]

Hi Cyndie - it was a four hour drive! We're on the Ayrshire coast and off to a magnificent castle called Culzean today. I am doing ok and already feeling a bit more normal out of cancerland!

[Lizz49]

Wow you’ve done really well and I dont blame you for not pursuing the sixth cycle...sounds like a tough regime and I’m sure you’ll enjoy your trip to spend time with your family, slow and easy sounds just the job!! You must be reassured with your low numbers and good results 👍 I’m currently on my first chemo mill and not finding it too bad, yet....cycle 3 under my belt yesterday and feeling ok.

Have a lovely time away and best wishes for your scan in May 💖

Liz Xx

[Solange]

Well done, Janet, on getting through five cycles. Do hope you have a good scan result. In the meantime, have a relaxing break in Hampshire. As regards being cold, I keep feeling really cold and all my friends keep saying the same thing. Even my husband who rarely feels the cold has felt it. We actually put the electric blanket on in the middle of the night, a few nights ago. Strange weather!! Xx😊

[Neona]

Hi Janet- well done - I have read that this regime is very tough. Enjoy your trip to Hampshire.

[Hertsmum]

That’s such a great result, so pleased for you! I had 6 lots of Cisplatin plus the tablets and agree it was the absolute worst regime i’ve had, and sadly it didn’t even work for me!!

Bet you’re massively relieved to be stopping. I actually felt better quicker than I thought I would even though it hadn’t touched the cancer! After a break went on to taxol and gemcitibine which so far has got ca125 down from over 2000 to 335, don’t like to tempt fate tho! Funny how we different things work for different people, well when you get into the science it makes sense I guess!

Enjoy your well earned stay in Hampshire being nurtured!

Madeline xxx

[Janet235 in reply to Hertsmum]

Thanks....yes it really is a deadly 'game' this treatment v return of disease. I hadn't clocked before that you are/were in the Rotterdam club. I don't think many manage all 6 treatments, but devastating it didn't work!

I feel so weak and wobbly with head in space at the moment I worry that I might not buck up ... my positive brain is failing me....

A slow walk round Hillier gardens today, so beautiful especially the peonies...x

[CynD in reply to Janet235]

When I first heard the term "chemo brain" I thought the doctor was making a joke about possibly feeling a bit dazed by the treatment. I came to find out that chemo brain is indeed a VERY real thing and just as much a part of it as all those other things that come along with cancer. I sat for licensure for my LMSW between chemo treatments. I knew I knew my stuff, but whether or not I could actually access what I knew was another thing entirely. Also, could I stay awake for 4 hours of testing, sitting in front of a computer screen, with no break and being monitored every second by camera's and the people watching me directly that were also watching the cameras? It was daunting. After they patted me down and agreed to let me wear my jacket because I was freezing, and my scarf because I had no hair, I sat down to do it. I dozed off once, lost my place SEVERAL times, but I passed that exam. It's amazing what we can do when there's just no other option and you've gotta work with what you got because there just ain't no more! You sound AMAZINGLY strong. Seriously. I don't have a doubt that your head will find it's way back from outer space, but, what the hell, enjoy it while you're there! If you have to write down on a post-it note why you're going from one room into the next then go ahead and do it. You'll probably have a nice laugh out of it. You inspire me!

...Cyndie

[Janet235 in reply to CynD]

Aww, thanks for lovely reply 💜

I do have to know what LMSW stands for and what you are qualified for now.

Thankfully I am well in my retirement years ( I was a special needs teacher)... no way could I be on the ball now with it all.

Yes chemo brain, can do that one ( and grumpy brain quite often) , but what I am talking about is the spaced brain, the constant headiness, almost to the point of dizziness where I feel I am not part of this world... plus now more than ever the disconnect between my head and my lower limbs I think partly due to neuropathy moving from feet into lower limbs. Just very peculiar...

I do need a stick now to balance myself and take great care coming down the stairs

X

[Coldethyl in reply to Janet235]

I certainly can relate to the spaced out feeling and weird legs post chemo ( not your regime just bog standard carbotaxol) - for months after I felt off kilter in my head and my legs still have will of own - a combination of neuropathy lower limbs and nerve damage in top of thighs from surgery - I ended up having to buy emergency flat boots once when out as my small heel just sent me wobbling and the shopkeeper’s husband was serving and we got on chatting about cancer and he said even two yrs after his chemo he was so dizzy so it’s not just us! Hope it improves for you xc

[Janet235 in reply to Coldethyl]

Yes spaced feeling started with the first treatment 2 years ago on taxol carbo and has never really left me, but moves up a level when I go into new treatment, I also have nerve damage on upper left thigh due to surgery which feels worse at the moment.

In fact I am going to post about this next.

[CynD in reply to Janet235]

Ah yes, grumpy brain and spaced brain. I know them well. Haha! LMSW stands for Licensed Master of Social Work. I'm more clinical (therapy work) as opposed to straight social services. Since cancer has happened I feel like I have a whole new level of empathy and experience to bring into the room in my work with clients. I would LOVE to work with cancer patients. I know all too well that if you haven't had cancer and been through it yourself, there is just no way you can TRULY comprehend what someone who DOES have cancer is really going through. I thought I had a special understanding - an "in" if you will - because I lost my mom to pancreatic cancer when I was just a teenager. Now that I have cancer myself I realize the breadth and depth of what she was facing that I had no clue about. In part because I was so young, but also because I wasn't staring my own mortality in the face and everything around that very grim reality. I had grief that was so deep I thought I understood cancer well, but I know now she was dealing with a grief that was so incredibly profound as she experienced loss after loss long before she finally lost her life.

...Cyn♥

[Jessica-DianeB]

Wow Janet, you are incredible. I’m so pleased for you. Go have a wonderful time in Hampshire xxx

[Hopefulgal1]

Just wanted to say you are amazing and to get through 5 is so brave. I have this as my next option at UCH but I don’t think I can go through with it as I’ve just finished Carbo Caelyx - horrendous and ended up in A&E 5 times with that so thinking perhaps to return to try Taxol again..? Anyway just wanted to say a huge well earned rest to you and please recover well xxxxx

[lorraine71-Australia]

Hi Janet, I just finished reading your post and was glad to read that you have had good results from treatment 4000 down to 116 is good, now hopefully you can get your strength back and enjoy your trip.

I hope your scan also shows improvement..Take care Lorraine xx

[CynD]

First of all, are you REALLY 70 or did I mix something up? You look amazing! Second, we have the identical hair! 3rd, I'm with you on the PN. Had 2 rounds of 3 chemos (taxil carbo-platinum), 21 days apart and my right foot feels like I'm hauling around a giant hunk of meat bound too tightly by something invisible and terribly uncomfortable around the top of my foot. It always feels too cold, and then sometimes too hot, but never normal. It's miserable and it never lets up. The second round of chemo wrecked my strength and my stamina and I STILL haven't come back to normal even though my last day was January 18. I had lost weight initially, now I'm putting weight on with lightening speed - ugh! I took some comfort in reading your post because I felt like I'd written it. I haven't had a recurrence yet, but i'm still in my 1st 3 months. That dreaded appt is this Tuesday and I don't mind telling you I've spent most of this past 3 months wrecked about it. This is a hard road to travel no matter the diagnosis, or prognosis, the good news, and the bad news. I'm glad your blood is holding out and that you're about to go for a holiday to visit your son. While I don't regret my choices along the way (didn't marry, no children), I see that family would be a very good thing for me right about now. The other side of that is I can see where it might make things more difficult in some ways. I guess there's good and bad aspects to everything. Anyway, I just want to wish the very best to you, I hope that your weather holds out (I couldn't believe how beautiful everything looked for the nuptials!). Here in Texas it's too hot, even more humid, and today it's been black and rainy all day.

Keeping you in my heart and in my prayers Janet!

...Cyndie