Well writing the letter worked!! I had a call today from one of the oncologist's secretaries to say that I will be seen by my usual onc. next Friday. So, will get the answers I need in a caring way.
Meanwhile I am enjoying the 'chemo break' by travelling around visiting friends.
He did say to try not to worry too much!!
I had already told him that I had written a letter to the Cancer Centre requesting to see my original onc. & he said I needed clarification of their previous findings.
Hugs to you,
Thank you Truddles,
I am very grateful for your explanation there is so much terminology to understand!!
Hi Monica, I work in the nursing profession and I've often seen letters written by doctors where a patient "denies " something. It simply means that you've answered "no " to a question ; it means nothing else, there is no underlying statement which may make you feel you've answered "no" but the doctor does not believe you hence he writes "denies". Don't dwell on it- there is no hidden meaning involved.
Take care, Truddles xx
Thankyou for your reply & I hope your treatment goes well. Saw GP yesterday & BP normal - at least something is!! He agreed that letter from onc. is lacking in detail & he noted the inaccuracies - I did not 'deny back pain' I have no back pain!! Luckily I have a good, communicative GP - he asked if I had been avoiding him as not needed to see him for 6 months!!
I feel better in myself - could be down to chocolate!!
Hugs to you,
Just found this thread, fairly new to the forums. I posted earlier today on the Bone mets thread as onc. has just written it on letter to GP - but did not tell me last week where he thinks they are!! I was dx last October, 13 years after primary triple neg - mas, fec & rads. My GP spent the summer trying to find out what was causing fatigue & odd blood test results. Tumour in abdomen causing slight stress to right kidney.Done 8 cycles of capecitabine with sore hands & feet - but no blisters for over a month!! Now being changed to Paclitaxol in a few weeks as onc said disease had progressed, he was not very helpful as I left feeling I had been interogated as to why I was not on Denosumab.
I will see GP tomorrow for bp check, he has always been supportive. I will definitely keep an eye on this thread.
I have been trawling through many pages of this threat to look for references of Internal Mammary nodes and Gemcitabine and Carboplatin chemo and on the last page I read ( as i started pages down 🙂 ) - I find both!!
After my primary diagnosis in May 2011 ( TNBC, 4EC + 4Tax, Lumpectomy, full Anx clearance, 35radiotherapy), I was again diagnosed in Nov 2013 with a local recurrence in two lymphnodes. One interpectoral and the other one in the internal mammary lymphnodes.
I had surgery on 2nd Dec 2013 to remove both.
The internal mammary node - had started growing into the rib and a piece had to be removed and was apparently the easier one. Unfortunately the one under the pectoral muscle had grown towards blood vessels / nerves and a nerv by my arm had to be cut. This was much harder and i get the impression - although they have removed everything visible, they were not happy about the margins.
Suze, I can imagine that a weird position of the node is difficult to remove. For me, i am glad its out. i was in pain before the op and the fact that it had started to invade into the bone was not going to be getting better soon. the operation however was also much more involved that i anticipated.
Can i ask - how did they find this internal node? in my case it was only found on a PET CT scan, which was initiated due to the interpectoral lymphnode they found on the ultrasound! I was in discomfort for months, but they couldnt find anything ( u-sound, mammogram, feeling, etc), so it was always put down to longterm radio therapy pains.
Anyway, I am starting tomorrow, 9/1/14, ( today, i suppose now ) the first 3-week cycle gem/carbo combo. After reading the most recent posts, I am glad I decided not to go to work during this chemo - unlike last time - simply due to infection risk ( ta, Cressida!) !
Hi and thanks to everyone on this forum , you are all so inspirational. I have just been diagnosed with Loco-regional recurrence in Internal mammary Node, twelve and a half years after 1st diagnosis.I am waiting to see ONC to find out treatment plan. Consultant mentioned MAYBE chemo to shrink tumour with option for surgery? This terrifies me as I am petrified of further surgery especially as it so close to main Vein. My worry is what will happen if I refuse surgery? Anyone have any idea, I know surgery would be the best outcome but as we all know it is no guarantee.
What a nightmare. The jabs are often routinely offered to everyone having their first round of primary treatment, but they are eye wateringly expensive, so they are generally not routinely offered to anyone else. Usually you have to "qualify" by having a lot of problems.
There is a temptation to think that the jabs will stop you getting infections. I know to my cost that this is not true. They do boost all your counts so you can "pass" the blood test, but, it my case it meant that blood tests that were taken to check if I had an infection were useless. I had very high infection markers, but they were happy that these were caused by the jabs. I did not have a temp until the last minute and they relied on that and carried on giving me the chemo. I was in severe pain and lost the use of my arm but everyone was happy I did not have an infection. I had seen my Onc, the chemo nurses, the lymphodema nurse, the BCN, my surgeon, my GP and been to A&E. No-one suspected infection. They gave me morphine and told me it was rads damage and a frozen shoulder. When my temp finally spiked it was very late in the day and I nearly died. Everyone said it was all extremely unusual, but it did happen. So I would be wary of thinking the jabs are the always the answer.
The other lady I know who had GemCarbo carried on without the jabs, she had a lot of delays and a few admissions, but she did finish the course.
Not sure this story is the kind of cheery thing you were looking for before your first GemCarbo!
Really wishing you well - do keep in touch. I joined a chemo thread, even though I was the only one not having primary treatment. It really was helpful. I feel a bit of a fraud coming on here as I have no evidence of secondaries, so I don't usually join in.
I have just found out that I have secondary of the lymp node apparently 1 got through even though I had been told I had clear margins... due to start GemCarbo Wednesday and like yourself was wondering/hoping for any tips as suffered through FEC x6 last round with low neuts in and out of hospital
Hugs and love
I have been trawling through the site hoping to find someone who has gone through the GemCarbo chemo. Unfortunately I have just been diagnosed with secondary breast cancer of the lymph nodes- 1 node affected even though I had been told I had clear margins 😞 I am due to start Gemcarbo this Wednesday and I have tried reading up on it- I had FEC x6 and it didnt work- was just about to start radiotheraphy when they found the lump on my collarbone-I also suffered badly with low blood counts and ended up in hospital many times but what Im concerned about is that my onc has said that I wont need the injections??.. I have mentioned this to my macmillian nurse and she is going to chase it up for me- considering Ive only just been told today what is exactly wrong with me...by the way this secondary was a blood blister on 1st examination by onc- then my liver had lesions ( which I didnt- liver clear) so now shes telling me that it can be "controlled" by this new chemo
So the news has devastated the family and have been through 2 weeks of hell- up to now I feel as they have got everything wrong with me- lump found after surgery was scar tissue ( I had Grade 3 IDC stage 3- WLE & SNB)- was told I was clear etc- sorry just having a rant cos I vowed I wouldnt google any information and as it is I cant find any info directly aimed at what Ive got so have emailed the mods on here
Please keep in touch as Ive gone from being given a few months etc to god knows what timescale now
Love n Hugs
The simple answer to that Teej, is that I don't know yet.
I had GemCarbo under slightly unusual circumstances; neoadjuvant FEC-T did not work at all and my (already very large) TN lump just grew. My onc tried to tailor the treatment (this is the whole point of neoadjuvant, after all) by first increasing the Tax (yuech) and then starting GemCarbo. But we decided on Mx before GemCarbo, so there is no way of monitoring my response. I had a clear CT scan when my Onc stopped the GemCarbo (more likely to kill me than the cancer, due to massive infection). Now I am just crossing my fingers. Seeing Onc next month to decide what to do next, but probably just wait and see.
Regarding low blood counts - I asked for and got the immune boosting jabs, but it turned out to have been a bad idea, as the blood count was artificially boosted by the jab and then they misdiagnosed an actual real and nasty infection until it was too late to treat it. I know another lady had similar problems with endless delays due to blood count problems. Maybe you could have the jabs, but be very careful of actual infections.
The mouth problems I found I could control a bit by scraping my tongue and using Corsodyl all the time. It stains your teeth over time, but that was the least of my worries. Nothing can make food tasty though.
Hope you do better this time, I think the worst sfx were from the first dose.
Thanks Cressida! I had first dose and felt pretty wretched, very nauseous for nearly a week, although nowhere near as bad as FEC. But my blood counts were too poor for the second dose of Gemcitabine on Day 8, then the following week my mouth almost disintegrated into sores/ulcers.! I'm due the second cycle this Thurs (gave up on the day 8 dose). Onc is reducing dose slightly and giving me more anti-sickness meds. I can't see how my white count will ever be good enough for the day 8 dose?!
I'm having another portocath fitted tomorrow - it looks hideous but no trouble and makes it so much easier, I hated having canula fitted - still got a bruise from three weeks ago. Was Gem Carbo effective successful treatment for you?
I had GemCarbo. When I posted on BCC last year to ask about it I didn't get a single reply, so when I saw your post I thought I had better jump in. It was definitely easier than FEC-T. It made me feel a bit sick (though I was never actually sick) and I had dodgy tummy (Omeprazole may help). It is delivered in 2 stages usually - Gem and Carbo in week 1, then just Gem in week 2, then week 3 off.
I found that the sfx kicked in a few days after week one and lasted pretty much until the day I had week 2, but week 2 (just Gem) didn't make them any worse. Got to feel fairly well, apart from tired, in week 3.
Also not so harsh on veins as FEC-T, so I managed without the Hickman line that I had just had taken out. Did start to hurt as time went on though, but I just didn't want the line put back in.
I think the main problem for me, was that I was knackered and worn down after a year of cancer treatment and it did knock out my immune system, so my blood count was always bad (causing delays) and eventually I got a nasty infection so that I didn't actually finish the full course of GemCarbo. So, I guess the message there is be careful of possible infections.
Good luck, xxx
Im yet to find out what my actual secondary is.. cos my onc is debating whether it is secondary or a new primary on my breast.. but the path lab are stating its secondary and its lymph node type etc..not really had much conversation with her as she told me I had got a few months at least :-((.. but this is one lady who is not ready to go yet as they have got everything wrong just lately!!.....she is starting me on gemcarbo chemo on wednesday and she told me it will control etc......just dont know whether im coming or going at the moment... as this secondary appeared halfway through me having FEC .. and I was told it was a blood blister!!.. funny looking one if u ask me..
Keep in touch cos at the moment I really dont know what thread to use..lol
I was hoping to not join your club but here I am almost exactly a year since first diagnosis. I start GemCarbo chemo for local recurrence in neck lymphs. Onc says this should be easier than FEC-T (which completely floored me) but any tips/comments gratefully received.
I'm sorry to read of your recent diagnosis. I've added here the link to the Secondary Breast Cancer page which gives details of support groups being run by BCC and also specific information which you may find useful. To go to the page just click on the link:-
I hope you find this helpful.
Best wishes Sam, BCC Facilitator