TNBC

Morning 

Warm welcome to the club no one wants to join - sorry to see you are facing Chemo but that was always probably going to be on the table given the TN status as there are no follow up hormone based meds for TN.

The chemo can affect the eyesight very slightly but not noticeably so and this reverts back post treatment.

Can I suggest you follow most of the other TN ladies and also join the Main Breast Group here - That way you get the benefit of both groups. The main group has far more members and also has the regular monthly Chemotherapy and Radiotherapy discussions for those having these treatments.

The risk of catching bugs is a concern mostly during the period of your chemo cycle where the white cell count it low (middle week of the three) Most just avoid large crowds and 'germ factory' toddlers during this week if possible - Hand sanitiser and rubber gloves for any mucky jobs helps.

Hope this is of some help for now - do check out the main groups March Chemo Club discussion for some tips prior to chemo starting.

Hugs, G n' J

Hi Dreamthief,

thank you so much for your lovely message. Im not very good with technology so have done well to get on here   Will join the main group too. Its so nice to see how supportive this group is   Eve

Hi , 

I was diagnosed with TNBC in Dec, Had a lumpectomy just before Xmas with clear margins and nodes but like you was offered Chemo. That was a hard decision because my surgeon had implied I would only need radiotherapy if the surgical biopsies were as good as I hoped (which they were). (You can read more of the technical details in my profile if you wish)

I started chemo in March and had my second treatment on Tuesday. My treatment is slightly different from yours. I am having 3 x FEC  every 3 weeks (9 weeks) followed by  3 x T (Docetaxol a different taxane from yours every 3 weeks( 9 weeks). I don;t really understand why women with similar medical status get different treatments - I think maybe different NHS trusts have different standards which seems barmy to me - but there you are. I am not having the carboplatin or bisphosphonates. And I have not been offered BRCA testing though I could have it privately if I wished. However in view of my age (66) and no family history I think it's low risk that I carry the gene.  

Everyone is different but my own experience of the chemo so far has been much better than I had expected. I had a few problems with a sore mouth and constipation in the first cycle. I started using regular salt water mouthwashes and my mouth improved quickly - and over the counter senokot dealt with the other!  Then a bit of a peak in temp on day 11 of the 21 day cycle which (I learned later) coincided with a very low neutriphil count (white blood cell) . Sometimes this is treated with antibiotics in case you have an infection but in my case (and possibly because I live very near the hospital) they just asked me to monitor my temperature which actually went back down quite quickly so did not intervene.    I am slightly wary of the taxane part of the treatment but that's another part of the journey so I'm not thinking too much about it yet.   

I haven't had any eye issues though I've been told that losing your eyelashes can make them slightly sore. Haven't experienced that  myself though lost most of my head hair between days 14 and 21 of the first chemo cycle (I didn't cold cap - not sure if that's an option for you). I just didn't want to spend the extra time in the hospital that cold-capping would have required. I admit I felt more upset when it started to come out than I expected - but had to keep reminding myself that it had been my choice.   

Like you I'm a bit freaked by the Coronavirus. I have decided to keep ourselves to ourselves as much as possible while I'm immuno-compromised - It seems silly to do the belt and braces for the cancer but not to do the same fo other possible risks. My Hubby is 75 and diabetic so also in the higher risk category. I'm keeping myself occupied with in-house activities such as crafting, and fortunately we have a sizeable garden to get out in when the weather gets warmer. I expect we'll get stir-crazy but maybe we can relax our social activities a bit when the medics start to understand the coronavirus risks a little better. 

In the meantime I send you all my best wishes for your treatment next week. If you want to 'friend' me for private messages please feel free. As I'm a couple of weeks further into the journey than you maybe that will be useful even though out treatments are not identical (and neither are we!!) . 

Hi all, hi Joanf

I am 60 years old, was diagnosed with TNBC in May 2019. No nodes and the tumor size was 2,4cm, Grade 3, stage 2, Ki-67 >%75.

The plan was neoadjuvant treatment begins with once every 3 weeks 4xAC, then 12xweekly Paclitaxel, Lumpectomy and 6 weeks Radiotherapy.

My doctors were quite sure that I had no BRCA mutation since my age was >50 without family history (my mother is 82 yo, I have 2 sisters 55-57 yo and 6 cousins, all healthy,) but my MO wanted me to have test just to be sure %100. The blood test result came as BRCA2 positive when I was at the end of 4xAC. My doctors revised the treatment plan according to BRCA2 positivity. They added Carboplain to Paclitaxel. Mastectomy instead of Lumpectomy.

Now, 3 months post mastectomy. Pet-CT and MRI were clean at the end of Chemotherapy.  Pathalogy after surgery was also clean.  I didn't have radiotherapy because of the reasons; 1) Complete response to Chemotherapy, 2) Mastectomy (not Lumpectomy), 3) Tumor size was 2.4cm (which is < 5cm), 4) No Lynph Nodes. There is association between BRCA mutations and overy cancer risk. So, Salpingo-Oophorectomy was added to my treatment plan. Salpingo-oophorectomy is the surgery to remove the ovaries and fallopian tubes.

Of course every case is different then each other. This was my story, hope it helps someone similer to my case.

I send you all my best wishes for your treatment. Please feel free to ask anything even if you think they are foolish

Kisses and huggs,

Yeliz

Hi Val

thank you so much for replying. I started my first EC on Tuesday. The first day I was ok. I reacted to the steroids the following day with night sweats and terrible vertigo.  Now I have broken out with cold sores around my nose and mouth which are very sore so have been given aciclovir for 5 days. Now my neck and shoulders are aching. I am never sick so not used to this...  Have you had similar? its really helpful to hear from you. Thank you. Eve x

Hi Yeliz

Thank you so much for your reply. 

I have had the brca test and should get the results next week. Fingers crossed...

I will be having CP like you once the EC is finished. How did you find the side effects?

hope you are keeping ok

Eve x

Hi

I'm so sorry to hear about your side effects. I am just at the end of my second FEC cycle with the third treatment due next Tuesday. 

My side effects have been quite different from yours. for about 24 hours after the infusion I feel like my heart is pounding. Then for the next few days the main issue is constipation which I now manage with stool softeners and senna preparations prescribed by the doc,   . Days 5-10 I have a sore/rough mouth and I think probably oral thrush. I manage that with scrupulous tooth cleaning  after meals and salt water rinses every couple of hours but I will probably ask for some anti-fungal  medication for the next cycle. It's not bad enough to stop me eating though. 

After the second treatment my arm started feeling quite tender along the line of the vein that took the chemo so I'll talk to the doctor about that. I also had  very low blood counts mid cycle after the first treatment so this time I had 7 days of daily injections of figrastim to boost neutriphils count (increased from 5 daily injections after the first treatment.. 

Also of course hair loss - I have now lost 95% of my hair.

This sounds like a long list but actually most of these side effects, though noticeable, have been fairly mild and have not stopped me getting on with things. By about day 11 of the cycle most of the effects have gone and I feel pretty much normal. I haven't had to stay in bed though occasionally I do feel a bit more tired than normal. And if it wasn't for this wretched Coronavirus I would be out and about doing stuff - I can't of course with a low immune system

But of course we are all different and react differently to the drugs. Just a quick questions about the cold sores. Have you ever had shingles. I am not medically trained but I was talking to a friend this week (NOT on chemo) who had a similar outbreak of severe cold sores and her doctor has diagnosed it as shingles. He said that it was something that might break out if she became run down . I was quite surprised as I always thought shingles gave you pain around your torso. I am sure you are keeping a close eye on your temperature. I tend to take mine about 3 times a day in the first half of the chemo cycle - just in case I pick up some kind of infection . In the second half when I know I'm feeling OK I just take it every morning. . . 

Not sure if any of his is helpful, but hope that in a couple of days you'll be feeling much better.

Good luck and stay safe.    

Hi Evie 21

I noticed in an earlier post you mentioned Steroids. I disliked the effects of steroids during my chemo because they made me really hyper and I couldn't sleep. To begin with, I  just enjoyed lying in  bed and reading but when I got to the 3rd  week I was awake from Tuesday morning (having chemo Tuesdays) until Saturday morning, needless to say I felt dreadful. I have always been very anti sleeping tablets but after that week, I took one every night for 4 nights each week. I didn't get hooked! and would recommend.

It is a year, this week, since I started my chemo. My hair started growing back as soon as the chemo ended and I loved the different stages as it grew. I have had my first hair cut this week and  my hair has never been so thick and in such good condition. 

I feel for you all under the present situation but I am sure oncology will make sure you get the best possible treatment. Even a year ago, the first appointments were a bit unreliable (so many to fit into a limited number of slots especially with Easter and May Bank Holidays)  but once I got into a regular slot it went smoothly. 

My thoughts and prayers are with you all.

Lizzie P

Hi Eve,

I am sorry for the side effects you are living.. I had AC not EC, the side effects I lived were different than yours. For the sore mouth, I used sodium bicarbonate instead of salt as suggested by my nurse. I rinsed my mouth 5-6 times a day. It prevents from receding gums as well.

I did not live severe side side effects whilst Carboplatin/Paclitaxel except the low platelets count in blood . At the beginning of CP it was 223k, dropped to 68k just after 2nd Carboplatin, the following chemo delayed by one week.

The MILD side effects I had; tingling in hands and feet for a couple of days after having Carbo, rare ringing and hot flashes in ears, rare hot flashes at soles of feet, pain at legs particularly at knees starting after 7th-8th week (I didn't need pain killer), mild swelling at ankles area, dizziness when platelet count drops, more visible veins (I am thin), some days sleepy mode for couple of hours a day, heart palpitations once or twice a day for a short period. I had B Vitamin complex whilst CP for neuropathy as my MO suggested.

I had no loss of taste, no loss of hearing /sight, no vomiting/ nausea, no change at skin and nails.

My hair started to grow 3-4 weeks after AC, but it was too rare and thin, I shaved my head once a month. At the end of CP it was 1cm, full and thick. 

Please remember that side effects vary from person to person.

Trust me all these will be over at the end. Good luck for the BRCA test result.

Hugs,

Yeliz

Hi Val, thank you for taking the time to reply   I am just digesting a telephone call from my oncology consultant this morning. He has advised for me to stop my chemotherapy treatment because of the risks of Coronavirus...   I’ve had a mastectomy but am waiting for the BRCA test result.  Its such s worry. A few weeks ago I was told I needed chemo.  Have you been told anything?  TNBC  is s concern. BRCA is a concern. But now its more safe not yo have chemotherapy...   I don’t know what to think now.  I’m either low risk or in the category of the unthinkable...   my poor family are worried sick. Eve xx