Treatment for neutropenia

Can anybody offer advice and info please?

Three months ago I had radiotherapy to tumours on my spine and went onto Arimidex. I am still suffering a lot of pain and my ONC has suggested the Arimidex is not working and it might be time for chemo. This has horrified me for several reasons.

I am allergic to some antibiotics and I think they are used when your immunity drops on chemo and your white cells start vanishing. I am not too sure he knows of my allergies as things were a bit hectic 3 months ago. Am I right or can they treat you with something else?

Also I have this feeling that if hormone treatment gets abandoned then I have lost 2 or 3 years off my life! I was hoping to stay happily on Arimidex for ages. It is so noninvasive…I could convince myself everything is fine if I feel fairly ok and have my hair.

One more thing worrying me. My primary breast tumour is still in situ and getting ignored .Is this normal? How long will they let me carry on with it still inside me? Surely it is still capable of spreading cancer cells throughout the body even though it has shrunk.

I do hope some of you very knowledgeable ladies out there have come across my worries and can give me answers.

Thoughts

Ruftikins

Dear Rufti do ask if you can have GCSF injections after each chemo as they keep your white cell count high and should minimise any chance of neutropenia.Do make sure your doctors know about your reactions to antibiotics.For neutropenia they are given as a preventative in case you get an infection so they shouldnt be inevitable.Good luck horacexx

Hi Ruftikins, I unfortunately are not one of the knowledgeable ones, There are alot of women here who know so much which is fantastic. I have never heard of the tumor still being in your breast? I always thought surgery was the first line of attack, you obviously have secondries too, poor you. I hope those doctors sort it all out soon? Ask as many questions as you can, like what grade of tumor it is. Anyway Good luck. Hope you win the rugby! Suzy

Ruftikins - are you having a bisphosphonate for your bone mets? These help reduce the impact of bone mets, deal with the hypercalcemia that often accompanies bone mets (too much calcium in your blood - result: pain & constipation) and can protect your bones from further tumour invasion. There are intra-venous (IV) and tablet bisphosphonates; many people with bone mets have IV ones, but I’ve been on Bondronat (ibandronic acid tablets) for my bone mets for four years – did away with the pain almost immediately, and have kept my bones pretty safe as well. I did have a blast of radiotherapy four years ago to deal with the pain, but none since. I have bone mets in my spine, pelvis, ribs and skull – get very little pain from any of these now.

Arimidex doesn’t seem to work for everyone - I took it for two years after my BC mets diagnosis, then got some progression with my liver mets in November 2005. There are several other aromatase inhibitors (AIs) available, so my onc decided to delay changing me to a stronger/IV chemo (have been on Xeloda tablets for almost four years as well) and try a different AI instead. Started taking Aromasin (exemestane tablets) two years ago, and have been stable since then. Maybe you just need a different aromatase inhibitor?

Some of the women I know were diagnosed with mets at the same time as their primary BC diagnosis (is that what happened to you?); rather than subject them to unnecessary surgery, their tumours have been left in place, and provide an extra indicator of how well their treatments are working. I’m sure some of these women will respond to your message.

We all have different responses to these treatments, but hope this info helps when you speak to your onc.

Regards, Marilyn

Hi Marilyn

It’s very uplifting to hear that you’ve been on Xeloda for 4 years - I’ve been on it for just a year now and it’s turned my life around from being extremely ill last year and being told that I needed to get my affairs in order, was in a wheelchair, had no energy, jaundiced etc (have liver and spine mets) but this chemo has really worked and I have very slight side effects (probably because I’m on a lowish dose due to the state of my liver) but the last two scans have shown an improvement.

I was on Arimidex as well plus Exemestane and they both stopped working within a year but I had been on Tamoxifen for 9 years so I think it’s very much an individual thing in who responds and who doesn’t.

I’ve been neutropenic a couple of times (and am at the moment) but not seriously so but I always ask the nurse for a print out of my bloods so that I know to be careful with what I eat or if my lymphs are down to make sure I don’t get that close to people who have colds. Also, my iron levels have been down (mainly due to the chemo) so a friend of mine, who is a practice nurse, has suggested that I have Mackeson or Guinness and Green and Black’s chocolate - yes, yes, yes!!!

xxx

Hi Ruftikins
I know what you mean when they seem to ignore the breast tumour. I was dx with liver mets only weeks after primary diagnosis. I have never had surgery even though the initial plan was for me to have a double masectomy. I also knew another lady with liver mets who never had surgery (I was 41 and she was 50, so age wasn’t a factor).

My Onc explained that the surgery would be hard for me and would need 6 months to get over it, he felt that it wasn’t going to extend my life so I never had it.( I have huge boobs !!!)

I am now 2 1/2 years down the line and touch wood I feel well.Whenever they check me, they conscentrate on the liver and not on the breast tumours.

It’s always hard to compare yourself to others, from my understanding there are effectively 50 different types of breast cancer and because of this one can’t simply compare treatments with others. The one thing that I do know is that with time the options increase.

Hope this helps in some way.

Ruthie

Hi All

Thought would just join in with this, not that got much info to help really. Was dx with bc on 16 July and told 10 days later that had liver mets too - well I can tell you, we were shell shocked and my world blown apart. No illness nothing to suggest this.

I was at the fist dx, told would need a masectomy to right boob, and not sure about left, and said whatever, I wanted a double masectomy, as got two little ones under 4. But when told had liver mets said masectomy surgery not an option anymore due to my liver. I am supposed to be going onto Herceptin after chemo, find out more on wednesday when got onc appointment. That is supposed to act as a barrier to stopping bc from spreading - no idea though, all new to me. Am gonna ask about masectomy, as I want anything/everything that I can have to help me fight this. Also going to ask about liver resection or ablation too.

Not sure if this is any help, but thought it worth putting down. By the way I am 39 too.

Take care
Dawn
x

Thanks for your input Ruthie. Its really reassuring that you are in that position and well after 2 and a half years. Gives me hope.

Since first writing I have got over my virus and the ONC is keeping me on Arimidex thank goodness. I am on Bondranat for my bones and he has just confirmed that my calcium levels are good and an xray is also showing healing in the tumour in my cervical vertebra.

He also confirmed he would give me GCSF if I needed to have chemo, so relief there.!!

He now thinks I need to see my breast surgeon and is writing to him. Just as I was getting used to the idea of non surgery it might be changing…actually I have been feeling uncomfortable under my arm and imagining that the lymph nodes are all swelling to ostrich egg proportions!

I am having to sort out my NHS pension at the moment which I am taking through ill health and one of the possibilities is commutation ie taking a bigger lump sum instead of a pension, because I will die in the near future. It is the equivalent of 5 years pension so I now have to work out if I will last for 5 years!!

Without knowing the relative infection of my lymph nodes there is no way I can work this out statistically, so another question for you girls…anyone else had to make this decision??

Thoughts Ruftikins

Hi ruftikins

Difficult one… health statistics…pensions they are all what if ---- some of the guys here have some really good info on this sort of thing… if you look at the threads … was it you Pinkdove with pension or benefits sorry if it wasn’t you…

good luck anyway

W

HI Wisdens and Ruftikins

I’ve applied for DLA and blue badge etc - the Benefits Enquiry Line is a good source of help and I found them really supportive three years ago.

Also, if you find that you have a lot of tablets which you have to pay for then you can get pre-paid prescriptions as they are cheaper.

Our support group has all this information on their website which is www.pbcsg.co.uk (stands for Peterborough Breast Cancer Support Group but it’s quicker to put pbcsg in it!).

I had to fight tooth and nail to get my county council pension paid earlier but they paid up in the end. Also, I wasn’t aware at the time but I’d been paying into my private pension with additional premium in case I ever became ill and the upshot of that is they now pay my monthly premium - can’t be bad! But you do have to be firm with them.

Hope this helps you Ruftikins.

xxx