Well it’s months since I posted, mainly due to ill health and other complications but decided today to have a read of some posts particularly as I’m about to start my next treatment regime, in the form of Herceptin and Letrozole.
Without going into too much history (you’ll fall asleep reading it all) I was, or am a June Jewell having started my one and only chemo cocktail on 21st June. In brief, I had one cycle (Tax and Cyclophosphamide) and Herceptin but within a couple of weeks and as a result of discontinuing my existing meds for arthritis and Uveitis (Eye disease) on my Oncologists recommendation, I developed a serious flare up of both total immobilising arthritis and sight threatening uveitis, I was admitted to hospital between June and August 4 times and needed 24/7 care which included the use of a wheelchair and walking frame, some days I couldn’t even get out of bed.
Anyway, by the beginning of Sept I felt well enough to start rads, I had 23 sessions, the daily drive and wait to and from hospital was the only drag, apart from suffering with a very sore, infected and split nipple that developed in the last week of treatment.
Following a lovely holiday in the sun (probably not the best idea as I came back with a chest infection) I am now due to start Herceptin but obviously have my concerns and I’m hoping the SEs will not be a problem as I am just starting to feel near to normal again. I appreciate I am fortunate to be offered this “wonder drug” but I’ve had my fill this year of hospitals and feeling so unwell.
I’ve just read the leaflet I have on Letrozole (Fermara) and the SEs sound worse than Herceptin! Just wondering if anyone is on this combo after or without chemo?
My one consolation, as a result of only one chemo, I have kept my hair, as prepared as I was with wigs, accessories etc., I think I would have been suicidal if I lost my hair……I know shallow but at 55 I don’t look that good in the mornings with hair, let alone without it……!!
If any June Jewells are reading, hi and I hope to catch up with you all somehow……
Hi Trish, I’ve not been on here for months either due to lots of reasons really. Saw your post and thought I’d reply as I have been on Letrozole since April and to be honest apart from more hot flushes and my hair thinning I’ve not really had any bad side effects and am happy to continue with it. However I’ve now been told if heart scan is ok I will be given Herceptin aswell. I’ve been through a lot of health and personal problems in the last 8 years since initially being diagnosed and was surprised to find out the cancer had come back in my sternum, soft tissue,lymph nodes in chest and a few spots on spine and rib earlier this year. I’m a very strong, practical and unfazed person who usually just accepts situations and gets on with them but I’m struggling a bit with the last visit to hospital and news that I’m to go on Herceptin. Can’t believe how I feel really, came out of hospital and actually cried! Think I was worried that onc would say I needed chemo too which I’m terrified of having as I’m so scared of loosing my hair. Although I obviously knew I had cancer it’s not really been a worry to me and I don’t think about it much but all of a sudden since my last appointment I’ve become scared and feel I’ve suddenly gone a step nearer the inevitable! Friends and family are very good but husband is another story! At present he is not living with me which is another situation I could do without. The reported side effects of Herceptin don’t sound very good but I’m sure there must be a lot of people who don’t experience these and are coping well with it.
You have certainly been through the mill haven’t you! I could write a really good, heart wrenching book about all the heart break and surgery etc I’ve had. Another rib is very tender and I’m really scared and worried that it’s all on a slippery slope. I’m hoping I will feel better once I start the Herceptin because sometimes I think the fear of something is actually worse than when it happens. I hate feeling emotional and really am trying to hide it as I don’t want everyone worrying because they know I’m not usually like this but I am finding it hard.the sooner I get a grip the better!
Love n best wishes to you and I’m sure you will be fine on Letrozole.
I can’t comment on the Letrozole, but I can on the Herceptin. I had 6 doses of Herceptin at the same time as my 6 doses of chemo, finishing in July. Since then I’ve had 5 doses of Herceptin on it’s own. I can honestly say I’ve had no side effects from it at all. My post-chemo tiredness and fatigue has all gone, and I have my normal energy levels back. I feel very well. I had a heart scan before it started, and have had 2 since then. No problems. Herceptin doesn’t affect the blood cells so there is no need to fear infections like there is with chemo. The infusion itself is easy peasy, it just takes half an hour plus a quick flush with saline, then home again. Maybe I am just lucky, but most others also do well on herceptin. There are, of course, exceptions!
You have really been through the mill, so I wish you all the luck in the world with your treatment. xxx
Hello Trish…I would be interested how you are getting on with Herceptin + Letrozole, as sometime has gone by, I am guessing, since you would have started with those treatments. Before I had a mastectomy May 2012 followed by chemo, followed by Herceptin + Letrozole in February 2014…Herceptin ends around April 2014 (was taken off it for 2 months until my heart LVEF% recovered to a ‘better’ reading). I suffer daily and constantly continually…aches, pains, stiffness, flu-like symptoms, headiness, exhaustion, tired eyes…it all wears me out + down. The hospital only ever says…take paracetamol, which does take the edge of all, but I try to limit the amount. I am 67yrs, but prior to 2012 had no particular health problems…feel like a 100yrs old now. I do not think it is just my age (as others like to suggest) because I had none of this prior to treatments!
I sometimes wonder, if it is just me, because I meet people who apparently, on similiar treatments, get and go through it all a whole lot easier. I do though pick up on this forum that other’s have similiar problems. In a strange way that somehow re-assures me that ‘this woman just protests and moans too loudly’!!! As you Trish (if you read this) I would be interested to know how you are doing, especially because you have pre-existing symptoms of arthritis, etc. I wonder if underlying pre-existing health problems are exacerbated by Herceptin/Letrozole…cannot wait (at least to get off the Herceptin) to see if my physical and mental self improves. My main fear is what permanent damage it may/could cause. I wish YOU and all afflicted peace and strength of purpose in all their endeavours to be whole in mind, body + spirit.