Sorry didn’t post yesterday as I had to go to the dentist.
I’ve found this research article which would indicate that dichloracetate is showing strong potential in the treatment of a range of cancers: ncbi.nlm.nih.gov/pubmed/19543830
however the problem seems to be that high doses are needed to be effective and that has a damaging effect on the nervous system. Please see opening couple of sentences of this 2011 research: ncbi.nlm.nih.gov/pubmed/21499304
Scarily it looks like something that can be bought over the internet. It’s certainly not something I would even remotely consider supplementing because of its harmful effect on the nervous system.
I am surprised that your Oncologist didn’t know about it though. There are a vast amount of clinical trials being conducted and it may hold promise for the future. Elinda x
i also was dx with lobular cancer but Grade 3 Er8 + PR8. I know this is an old thread but as not so much info on lobular on the forum I thought I’d add my experience re the 2 issues brought up on the thread. Letrozole V Tamoxifen and chemo or not.
As my cancer was Grade3 and quite extensive I got the ‘throw’ everything at it especially as I had 11 nodes affected. I didn’t find chemo too bad. 12 weeks of EC every 3 wks then 12 wks of Taxol weekly (so more often but a lower dose). If it decreased the chances of it returning by even 1% it was worth it in my opinion for just 6 months of chemo. My main side effects were losing a toenail and numbness in my feet - but all much improved now it’s 5 months since chemo ended. But def think it’s worth trying chemo if anyone’s onc has suggested and they are unsure - as you may be one of the lucky ones who don’t get so affected and can even carry on working but if you do get bad side effects you can always stop.
re the Letrazole question. My onc gave me the choice of Letrazole or Tam. I asked him which he thought was best and he said Letrazole but to move over to Tam if I had problems with Letrazole. This particular onc is the top guy at a central London hospital and has an interest in Lobular cancer. I assume from his answer that both are OK for Lobular but maybe Letrozole has the edge or is better suited in my case. I will add that so far I haven’t had many side effects with Letrazole but it’s early days as I only started on Feb 12th 2016! It’s hard to know if I’ve been affected by hair loss as my hair hasn’t really grown much since I finished chemo. I now have tight short frizzy curls instead of straight hair so it seems to be growing in curly circles! I also have slight pain in my thumbs which are due to the Letrazole but no other side affects. Crossing fingers things stay that way. I’ve also been advised to stay on Letrazole for 10 years. Hope that helps Baz xxx
Thank you ladies think we need to get this thread running again. I was diagnosed grade 2 ILC in Jan 2015. Grade 2 58mm no nodes involved Pr+8 Er+8. I too am at top London hospital. Offered chemo but like Didi 2 turned it down as 2-3% and was frightened i’d lise my job with anymore time off. Had rads and been on tamox for 1 year. My oncs are real specialists in their field I’m premenopausal as tamox ups my odds considerably. Good to hear what other ILC ladies say about this. Have also read that our odds of survival are slightly better than DCIS.
Hi Dizzy, I’m post meno so might explain why Letrozole better in my case but from your reply it means Tamox & Letrozole still main treatment options for hormone plus lobular.
I said my cancer was Grade 3 - I meant to say Grade 2 but Stage 3 so probably worse!
I’ve also heard lobular better survival rates but downside is it’s harder to diagnose!
I’m having a bit of a nightmare at the moment as just been diagnosed with massively under active thyroid. Kept telling onc, nurses, radio staff I was exhausted & anxious and had put on weight. All put it down to chemo (I had 6 months of it & usual to put on weight coz of steroids), and anxiety normal (even though wasn’t anxious until radio). Saw breast surgeon for routine appt 13 days ago & told him my woes. That I was just fed up puffy faced & exhausted. Finished radio mid March but feel worse than ever! Blood tests revealed my T4 was less than 1 and TSH (thyroid stim hormone) was trying so hard to make thyroxine that it was 59! Should be under 5. Breast surgeon not impressed that the 3 pages of blood tests I’d had 3 weeks ago (when given Zometa infusion by onc) did not include thyroid! I’ve got Carpel Tunnel Syndrome caused by thyroid, and nothing has got better yet as they have to up the meds slowly! Frustrating as can’t put splint on carpel tunnel wrist as same wrist all lymphnodes taken & can’t have anything restrictive on it. So can’t use wrist! Thank goodness breast surgeon listened to me & diagnosed it! He said anxiety is a symptom of my thyroid prob. That he thought odd that I only got v anxious at start of radio. He thinks was thyroid causing it. Just thought I’d share that with you. Sometimes oncs see everything through cancer lense & dont consider other things. The tingling in my fingers was considered to be a late side effect of taxol (my 2nd chemo) when it was the beginning of Carpel Tunnel Syndrome! Maybe I should have started a new post about the thyroid thing in case anyone else going through same? Anyway hope all Lobular Ladies are doing well
Baz x
Hugs Bazookas love your username!!! Letrazole is the gold stanatd for BC treatment. There has just been a world cancer conferenve in the USA where they said the longer er+ women are on hormone therapy the better it really improves survival odds and stops recurrance. I’m on tamox for 10 years then they want to put me on AI’s like you when i go through the menopause. Do you get side effects from Letrazole? Xxx
Hi. I’m new here. hope someone will answer!! Had ILC. had right mast & rad. Started tamoxifen tonight but really Leary cause of risky/life threatening side effects. Anyone have any comments/experience/side effects to share?! Thx
Hi Candee,
Many of us are fine on tamox, or at least find any side effects manageable. I was anxious before starting it & reading forums was not necessarily helpful, as inevitably, those who have issues will post. Those who don’t, won’t need to.
As with any drug, the list of side effects can look alarming, but it does not mean you will have any or all of them. Any life threatening side effects are extremely rare, but are always stated in any drug info anyway. The risk of recurrence, would be far higher.
As ever, it is doing an important job, so the only way to find out how it will be, is to see how you get on with it & deal with any issues if they arise.
Wishing you well with it.
ann x
Hi Candee,
It’s most likely just a coincidence. When I started it, I remember thinking after 2 hours of taking the first dose ‘any side effects yet?’
As I’ve said below, I’ve be been fine on it & many of us are, but I certainly remember being hyper aware of anything when first taking it.
ann x