Well, ladies, I have had some disappointing news these last few weeks.
I went for my regular pre-Chemo blood tests, but my Oncologist called me the next day to say my Liver function looked bad.
I wouldn’t be having Chemo and instead would get an Ultrasound of my liver. Also, my cancer marker had shot up from 226 three weeks ago, to 446.
I was stunned by this news, as was my little family.
I had the ultrasound and another blood test last week.
But, my liver function looked worse and my CA-125 was now over 600. I had become Platinum Resistant..
The liver ultrasound showed two new spots of disease INSIDE my liver. Up until then, I thought they were in the outside.
All the Chemo drugs I wanted, Gemcitabine or Caelyx are excreted through the liver, so, as I have had no success with Carboplatin or Taxol, there was no Chemo for me.
Naturally, I was devastated.
Instead, I am now in Hormone Therapy, as my cancer tested positive for Oestrogen.
I have been on Letrozole for exactly 4 days. The literature says it shrinks tumours. That it is given to Breast Cancer patients to shrink their tumours before surgery.
So after a night of resignation, planning my memorial, etc, I bounced back to my normal optimistic self.
I have a CT scan next week and I will see my consultant again soon after.
I will give this a month, before looking for a trial.
Meanwhile,
QUESTIONS for those with experience of Letrozole:
1. My appetite has returned to zero, is that the drug?
2. I am very weak and tired, the drug or my liver?
3. My hips and legs are very achy when I walk around, Letrozole?
Thanks in advance,
Laura
PS: One good bit of news: my bowels are no longer scrunched by the cancer, so I can eat normal food! No more low residue diet! But the cancer had slowed down my bowel function, but I have ended the months long torment of constipation with just Senna and Docusate Sodium. Hooray!
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Lindaura
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I can just imagine how you are feeling, my own circumstances have had recent set backs.
So very glad you feel able to tell us and that you are ready for a fight back. Sorry no experience of Letrozole.
I am interested why they have decided now on hormone treatment. I always believed this was available to all brca women and often given alongside chemo. This is not a criticism of your team.
Dear Laura, this is the news none of us wanted to hear. I’m so sorry. I have no experience of Letrozole but I have heard of it. Maybe on the American site ‘Team Inspire’ I look at that occasionally. Really happy you’re not giving in to this vile, cruel
disease. It’s not your turn yet.
Lots of love and hope. You can beat this. Angela xxx
Oh Laura, that is beyond disappointing... we endure chemo in the hope of remission and it must be particularly gutting to be midway and get this news. But as others have said you always find the positive.... so all power to you and let’s hope it gets on top of those pesky cancer spots xx
That’s so disappointing Laura. This disease is such a physical and emotional roller coaster. This weather is enough to make anyone feel weak and tired. Stay cool, stay safe and most of all keep bouncing back. Sending lots of love and encouragement.
Laura, so sorry to hear your setback, but glad after the shock you've managed to get back some of your positive spirit. Have no personal experience of Letrozole but Macmillan list the following side effects:
Hi Laura. Your results sound demoralizing but the bowel thing is really good news! Don't people get cyberknife surgery for mets in liver? I have no experience with letrozole but it seems like people do well with it. I hope it kicks the cancer's butt. You have a great spirit and are an inspiration to me. xx
Hi Laura, I am sorry to hear you have received this disappointing news but delighted to hear that you are not giving up the fight. I have no experience of letrozole so can't help you but I hope they can sort you out soon and that you will bounce back from all this. Will be thinking and praying that all will be well for you Xx
Hi Laura, following my first line carbo taxol I was on letrozole for a year. I had no side effects once I got going and felt really good on it. Sadly towards the end of the year the numbers started creeping up again and I was taken off that and put onto tamoxifen. I had so many issues with that I stopped taking it! Hope you do well once the letrozole gets into your system. X
So Sorry Laura you have had a set back hopefully you will do well on Letrozole. I am Oestrogen positive as well and was on Tamoxifen for a year, but I couldn't stand the toxicity and side effects. I asked to change over to letrozole about 6 weeks ago and tolerating it really well so far.
I too lost my appetite the first couple of weeks but seems to have returned now. I also had bone pain in the hips and legs and was painful when walking, but it was worse on Tamoxifen. The bone pain seems to be easing now and walking much easier now.
I also take collagen powder, a probiotic and Kefir for the gut and sure that is helping with side effects as well.
Hope you get on well with it Laura , keep us updated
Sorry to hear your news - I have friends on hormone blockers and the bone and muscle pains seem a frequent complaint along with increased fatigue. I’d be starting to investigate possible liver surgery as that is offered to the likes of bowel cancer patients with liver involvement and there is something called SIRT I believe which is a special radiotherapy and other specialist targeted cyber knife treatments - I don’t imagine available on NHS but certainly worth contacting the Marsden - wishing you well cx
It does annoy me when I see what other cancers get offered by way of additional surgery etc - it’s as if the assumption is with OC we are dead anyway - which might have been true ten years ago ( for most cancers I’d think !) by late stages but now there is so much more out there to try . Good luck x
My dearest, Laura! So sorry you went through that disappointing news. However, you sound like the old Laura. Optimistic.
Sounds like they found the right cocktail for you. I’m especially happy your constipation has resolved. That makes one feel soooo miserable. Senna is my salvation!
Continue on this path to healing. Good luck with your scan. Please let us know how that goes. I’m sure it will be successful.,
I’ve said it before and I will say it again...your positive attitude is what makes your treatment work for you. Sending you hugs and happy thoughts!
Dear Laura so sorry to hear your news. I really hope the Letrozole works with you and for you. As for the liver that is a concern. I have the disease on the outside and worry that it will break through to the inside. I asked my consultant about possible surgery, transplant etc etc but he says no as it's only just one area of the mets and therefore it's not going to make a lot of difference if nothing can be done about the other bits. I kind of understand but the liver is the one organ that can regenerate well. It's probably a financial thing so it may be worth exploring other avenues.
I'm glad you still sound so up beat as it's the positive attitude that gets you through. Good luck with the next scan.
Ah damn and blast about the chemo but hoorah for coming off the low residue diet. Tough times but you're a tough cookie Laura. Hope you do well on Letrozole. Xx
I am sorry to hear your news about your chemo but hoping and praying that letrozole does a good job at holding ‘it’ at bay.
We all know it can take a lot of energy to stay optimistic when these set backs happen. So I’m hoping the change in diet will give you a boost and am sending lots of positive and encouraging vibes your way .
Dear Laura . What a bummer that was to find you can’t have chemo which you were expecting .
First I must tell you my good friend recently married a super guy who is , a year later , in great shape . He had Several cancerous spots inside his liver after he had chemo for cancer at another site . They were surgically removed. He made good progress and lives and eats very healthily . But no chemo.
Letrizole has many side effects I’ve found , including aches and pains in muscles ; down legs: fatigue ; osteoporosis : loss of appetite but it is a terrific drug and seems very effective in keeping the oestrogen sensitive cancer on the back burner. It took a few months to get used to it but for the bone problem I’m having I v Zolodronic acid (sp) and take calcium and vit D daily .
No noticeable bowel effects but I eat plenty of fruit etc and drink a lot of water.
I hope so much that your Onco team will find the regime that suits you and that kicks out those lesions for good , so you can get on with your life .
You deserve the best treatment around so don’t accept anything less!!
Hi Laura How are you feeling today ? Do you have a liver specialist in your area whom you can consult and review the Taxol effects you had? I was recalling how toxic it was and wondered if a reduced dose could be tolerated ? Just a thought . Hope you have a manageable day and get plenty of rest !
So sorry to hear you have been disappointed in your hopes for more aggressive treatment. I have been on letrazole following chemo and immunotherapy, as a maintenance drug, for the past 7 months. I was told that any side effects would manifest over the first six months, then possibly abate somewhat. It tends to cause symptoms like menopause (hot flashes, night sweats, mood swings), plus joint pain. In my case, I've experienced some vaginal dryness and a slight increase in joint pain, but I am arthritic to begin with. So I've tolerated it well. I was told that if I did have more severe side effects, there were alternatives they could go to that would accomplish the same thing. I hope it does the trick for you! All the best - Deb in Colorado
Hi Laura. Sorry to hear you have had such disappointing news. I'm afraid I can't offer any insight on Letrozole but I do want to wish you well with your new treatment. I hope it shrinks and keeps the cancer well at bay. So glad you got your mojo back and are ready to carry on your fight against this bloody disease. Lots of hugs. Jackie x
Hi Laura. Glad you have recovered your optimism despite the news. I also have had bad news. My CA125 has been racing away, 389 as of three weeks ago. I had a scan 10 days ago, and had the results last Friday. The cancer is growing around my liver, (what is it with the damn liver!!), The tumour I had in the pelvic area which was 5cm, is now 10.5cm , and it is spreading in the peritoneum. All of this after I went down to CA125 of 12, just 5 months ago on carboplatin, and got rid of the liver lesions. I am now also deemed platinum resistant, and I start weekly paclitaxel on the 21st, which will be 4th line treatment. All I need now is a bowel blockage to really make my day. To add to this, we have just started to lock down again, as we have somehow got covid back in the community after 102 days clear. The world is 'going to hell in a hand cart'. Take care, Therese
Hi Laura. It is actually worse than I have said. I have just seen the ct report today, and it would be easier to say where it is not, rather than where it is. My Oncologist has said when I see it to understand that it reads worse than it looks on screen. It will be an interesting discussion next Friday. He has said I still have options, and it not the end of the road. But pretty disheartened today. I just don’t understand how it got so bad over a period of four months, since my last scan. I do hope something can be sorted out for you. Lots of hugs Therese
I've been taking Letrozole for over 2 years. No loss of appetite - I wish I had, I could do with losing some weight. I get some joint pains at times, which the the oncs tell me they think is due to Letrozole, though I do have arthritis as well, & I've been told fatigue is another possible effect. But over all I've been ok on it, it's much easier than chemo & I'm hoping I to be able to stay on hormone blockers for as long as possible. Hope it works well for you. Di
Oh Laura, you've certainly not had a lot of luck with your chemo treatments so here's hoping the Letrozole does the trick.
They'd be no harm in starting off a search of trials in the upcoming month because as you know, it takes sometime to get accepted with all the hoops that need jumping through.
I've not had a hormone blocker as of yet so can't give you any info.
Laura, I have no experience with hormone therapy but just want to wish you much success. Sorry to hear that you went to a dark place, but I love how your optimism returned - you are truly an inspiration to so many. Love, Ruth x
This disease sure pits us on a roller coaster ride. Every day is a new situation. I am glad to hear you are having some relief with your bowels. I hope the new drug will help with shrinking the tumor. Stay strong!
Hi I to have been put back on letrozole as they say my tumour had grown slightly and to seeing if it strinks the first time I took it I had achy muscles but this time it is fine trying out before I have any more chemo I have not had chemo for three years
Hi Laura. Worrisome news indeed, sorry. For me (on Letrozole for 2 years now), the side effects are mostly fatigue (being tired and without energy the whole time), vag. atrophy and some joint pain (plus hot flushes). Hope it works for you. Maus
I have been on Letrozole since January 2019. So far, so good🤞. I do get hot flushes, night sweats, aches and pains and tiredness, it sounds a lot worse than it actually is! As I'm retired I can take things easy if I need to. All results so far have come back stable, so I don't mind putting up with the side effects. Best wishes.
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Mum with low grade ovarian and limited treatment options
Rising CA125 while on chemo. 
Update chemo stopped working,,options too few. 
Feeling deflated
