TNBC Has anyone had chemo terminated early - by choice or Onc decision?

Tasia

Hi,

I am interested to learn of stories where chemo has been terminated earlier than the planned treatment.

I was diagnosed with TNBC mid Aug 2020 - GPʻs words ʻvery aggressive grade 3, 3 cm tumour). The following week, I started AC, short break due to some challenges and then commenced Taxol weekly. I have now had 9 taxol sessions and am wondering if anyone on this forum has stopped early and by doing so any insight on the risks to survival and of recurrence.

Also, any insight on surgery - what drove your final decisions?

I have raised this topic with my onc and she suggested, I take some time to think about my final decision; her advice was to see the Taxol to the end. My finger tips and nails have become increasingly sore, with brown discolouration and a few black specks on my thumb, since my last consultation with her. She may very well, alter the taxol now.

The med team plan is surgery after chemo (not sure type of surgery yet, I have a meeting with the breast surgeon this coming week), followed by 5-6 weeks of rad and then who knows.
I had a Genetic Blood test for BRCA mutations in September but something went wrong at the lab and no results provided. I have a history of BC in my maternal streamline. 

xx

shs14

Hi Tasia, have you read the posts about cold therapy for periphal neuropathy while taking Taxol. A few of us have found it helped us avoid the worst of the symptoms you are having. All it takes is some latex gloves and a bowl of ice during infusion. Worth trying at least maybe.
I wish you luck with your cancer treatment. Susie

Afraser

Dear @Tasia

I nearly stopped Taxol - my problem was quite serious peripheral
neuropathy, particularly in my feet. My toenails had badly discoloured, fingernails much less so but I wasn’t too concerned about that - the pain in my feet, particularly the toes before dose 10 made me concerned about my ability to walk if it got worse. My oncologist and I agreed to continue on a week by week basis - and I almost certainly would not have had my 12th dose - if I hadn’t found a lump
under my good armpit! Long story short, completely unrelated and benign. But I went for all 12 - I felt that I wanted to do everything I could to not go through it a second time. I’d already had surgery and had 12 months of herceptin as well. My feet still have some side effects, nails all recovered in time, but I have no regrets. I started taking Vitamin B about dose 10 - may have been entirely coincidental but things got better after that. Best wishes. 
PS Eight plus years on, well and active. 

Tasia

Hi @shs14, 

I had mentioned the use of cold therapy to the BC Nurse and she said it didnʻt really make a difference to use of Taxol (?)

I will address it with the Onc on Monday. 

Many thanks x

Tasia

Hi @Afraser,

Initially, symptoms popped up in my feet - my big toes but somehow the toe/feet situation jumped over the hurdle. health free. My fingers have taken the hit.
Iʻm moisturising, keeping my finger nails short, cotton gloving and cotton/latex gloving for any hand water chores. Iʻm salt soaking and applying tea tree oil to keep control of further deterioration. All was going reasonably well until week 8 and this week, it has moved up a few notches.

I also would have had concerns around losing the ability to walk or use of hands/fingers. So many truly hard decisions one is confronted with. Is herceptin a chemo med?

Thank you. 
A good ending story Afraser

shs14

Hi Tasia,
I'm going to tag you in the post I wrote which has anecdotal evidence from people who tried cold therapy about their experience so you can read about it for yourself. I don't agree with your BC nurse. My oncologist is now recommending this therapy after seeing my good results.
It sounds pretty bad but it is just uncomfortable (and thats from someone who did 12 weeks of it!) It can't hurt anyway. 
There are a few positive studies but it hasn't been well researched, perhaps because there is no money to be made.
I have a friend who had symptoms early in her treatment (on AC) who started cold therapy before Taxol and made it through the whole course - so I've seen it work. She was TNBC too. I used cold therapy and only had one week where I experienced symptoms and that was when the infusion dragged on and my thumbs didn't stay cold. 
Whichever way you go I wish you well   

Afraser

Good endings are what we work for! Although I am hoping mine is a long way off yet! 
I had the problem about the same time - I went through A/C pretty easily - hair went of course but otherwise nothing much. Taxol was one irritation after another but PN was a pain in every sense. All oncologists will want you to complete the course - they are using all resources at their disposal and you’d want that normally. Many oncology nurses will say that 85% of the permitted dose is of equal therapeutic value. A bit extra is ‘just in case’. Even my good but cautious oncologist was OK with missing one treatment. Some things you have to
decide on your own, I’m afraid. Overall, most people with PN recover pretty well. I do have continued funny feelings in my feet, but it doesn’t really stop me doing anything and it’s unusual to linger this long. It is still improving, just the speed is glacial.

Herceptin is part of a chemotherapy regime recommended for people with HER2 receptors. My tumour wasn’t affected but the only malignant lymph node was so they treat you as if all is. Herceptin has been proven to be very effective. As far as I am aware I had no side effects at all, but you are monitored for any heart issues. 

Afraser

PS Ice therapy wasn’t offered when I had treatment but seems helpful - may not however be as helpful when you are through most of the treatment and issues are already apparent. No
harm in trying though. 

Tasia

Thank you @shs14  
I look forward to learning more and furthering this discussion with the onc on Monday. I have been sitting on the fence re terminating chemo (some weeks ago, I was even contemplating ceasing treatment completely). I will embrace anything that will take away any of the inner unwellness chemo causes whilst in warfare with the cancer. 

Always looking for ways to help my body heal as it navigates this path x

Tasia

Afraser said:

Good endings are what we work for! Although I am hoping mine is a long way off yet! 
I had the problem about the same time - I went through A/C pretty easily - hair went of course but otherwise nothing much. Taxol was one irritation after another but PN was a pain in every sense. All oncologists will want you to complete the course - they are using all resources at their disposal and you’d want that normally. Many oncology nurses will say that 85% of the permitted dose is of equal therapeutic value. A bit extra is ‘just in case’. Even my good but cautious oncologist was OK with missing one treatment. Some things you have to
decide on your own, I’m afraid. Overall, most people with PN recover pretty well. I do have continued funny feelings in my feet, but it doesn’t really stop me doing anything and it’s unusual to linger this long. It is still improving, just the speed is glacial.

Herceptin is part of a chemotherapy regime recommended for people with HER2 receptors. My tumour wasn’t affected but the only malignant lymph node was so they treat you as if all is. Herceptin has been proven to be very effective. As far as I am aware I had no side effects at all, but you are monitored for any heart issues. 

Aligns with what the onc said recently around their minimum target % and the ʻjust in caseʻ top up.  I can accept a glacial pace but not a permanent condition; it will disable my capacity to continue employment in the positions I hold. 

Ongoing positive and healthy endings

noosa_blue150

My second chemo,regime was taxcel- by week 8 I had signs of PN and oncologist reduced weekly dosage down to 75% for next three weeks and last week it was 50%. She was concerned I’d be left with PND that would be difficult to live with .   I’m now a month after chemo - some signs  of PN remain (intermittent tingling , numbness in toes) and I think noted as grade 2 PND in my notes. Manageable, thanks to reduced dose and effects .  By time of surgery my original almost 4 cm lesion was difficult for imaging to locate by U/S, so,the chemo (both AC and Taxcel ) had still been effective .  I wasn’t offered ice therapy but had read of it - to be honest I don’t think I would,have been able to tolerate the cold factor. I did wish that I’d painted my nails in dark nail polish to,see if it would have offset the major damage both chemos wrecked on my toenails,and fingers. Feet and hands still missing nails and splitting badly a month later .
good luck with your discussions with oncologist 

Tasia

Hi @noosa_blue150,
Thank you for taking the time to post and share your experience. 

Great news re the effectiveness of chemo 

I also researched the use of nail polish, particularly the OPI original and ordered a bottle. I returned it after reading the ingredients - it contains formaldehyde, so I returned it. Didnʻt want any more nasties (Iʻm also allergic to f/hyde). 

What has your med team suggested to repair the current state of your nails?


Many thanks and my very best to you x

Dory65

Hi @Tasia, I can't offer any advice, but I just want you to know you are in my thoughts. All the best. x

noosa_blue150

hi Tasia .No one on the med team has mentioned anything about nails to me ( they were only concerned if there was any signs of infection ). I’m just applying handcream regularly and waiting for them to,regrow. Now it’s just annoying , not painful anymore 

Tasia

Hi @Dory65 - Many thanks 

Abbydog

Dear  Tasia.
My oncologist always wanted to know if I had PN symptoms.
He said he would be happy to give less or finish early, monitoring PN. He was very happy for me to get past 75%
Luckily I didn't get PN. And completed 12 sessions.
I did get nail symptoms. Some brown spots. And the white part of fingernails, went deeper into the pink part. 
Fingernails now normal, 5mths after Taxol.
I don't know if the use of nail polish would change outcome or just hide it.
My large toenails have receded, and I'm not sure how they will end up. 
I wasn't worried about nails and how they would end up, enough to stop Taxol.
But I would seriously monitor for PN, to be prepared to stop or reduce for PN.