Heartbroken, but unbroken

Brenda5

Something you may not have been told or they just skim over it is that after all the lymph nodes are gone that arm can get lymphodema. Mine was at its worst during chemo and a physiotherapist at the cancer care clinic gave me compression sleeves and a hand gauntlet for it. After chemo it did settle down a lot to what it was and now I seldom need to wear the sleeve any more.
The oncologist I saw a fair bit but it was the oncology introduction nurse who showed me around the treatment area who answered most of the day to day questions.

strongtogether

Hi Brenda,
Actually my wife is a lymphodema specialist, so that part we have covered. 
Isnt it ironic?

kitkatb

@strongtogether  Everyone has put up some great answers.  But definitely reiterate what Sister mentioned.  If the med's aren't helping with side effects then for sure chase up your Onc or via your BC nurse as I was extremely sick after the first 2 chemo sessions until they changed my pre chemo med's and after chemo medication and it made a big difference moving forward for me.   Don't be shy to let them know something isn't working.  Hoping all will be good though.   xo

Shellshocked2018_

Have sent you a private message 

strongtogether

Hi folks,
So...... The first chemo session is tomorrow. Its four sessions, once a fortnight for eight weeks, followed by 12 weekly sessions.
Feeling good about it all. Let's kick this cancer's ass!

tigerbeth

good luck @strongtogether xx

Zoffiel

If there is anything good (?) about being young, it's that you are likely to cope with dose dense chemo which is showing very promising signs of being much more effective. It's tough, physically, but the physical is only a part of the struggle. Good support is invaluable. Best wishes to you all. Mxx

strongtogether

Zoffiel said:

If there is anything good (?) about being young, it's that you are likely to cope with dose dense chemo which is showing very promising signs of being much more effective. It's tough, physically, but the physical is only a part of the struggle. Good support is invaluable. Best wishes to you all. Mxx

Hi zoffiel,
 I know we arent meant to do this....but have you seen any literature around that? I gather does dense is the term for the newer regime of bi-weekly instead of every 3 weeks?

Zoffiel

Ask your oncologist about that @strongtogether. Dose dense was still in late stage trials last time I had chemo. I was keen to get everything out of the way as fast as possible, with optimal results. My age, past history and regional location, meant it was a 'no' for me. At the time.

Now, this is my interpretation of what I've been told; a bogan synopsis.

Chemo as we know it has not been around for that long.  Early patients suffered horribly for questionable outcomes.
Antiemetics (no spew drugs)changed  the degree ofsuffering. But not necessarily the outcomes. The idea was to deliver the chemo in a way that prevented cancer cells from reproducing--kill them before they could breed on what was assumed to be a 28 day cycle. Thus the three week chemo. It was also as much as the patients could bear.

Things have changed. Drugs to stop you chucking your heart out, to boost your white  cells--all manner of improvement. This has meant that  it's possible to deliver chemo on a more frequent schedule that will bump off more nasties. Its a brave new world. But you have to ask the questions relevant to your circumstances.

Once again. This is a non medical explanation. Mxx

Giovanna_BCNA

Hello everyone,

Thats a great non medical explanation @Zoffiel!

I have attached a link below about dose dense chemotherapy
https://www.oncolink.org/healthcare-professionals/o-pro-portal/articles-about-cancer-treatment-and-medications/dose-dense-chemotherapy

Another great site is eviQ where you can look up the actual chemotherapy regime for further information.
https://www.eviq.org.au/patients-and-carers/anticancer-drug-treatments/breast-cancer

@strongtogether hoping the first chemotherapy session went well today, all the best.

strongtogether

Thank you Giovanna.
And thanks again to everyone here. The last two months have been hard. I hate that this is happening to anyone, and I hate that this is happening to us. It feels stupid to say it. Of course I hate it, everyone does. 
It has been a frustrating and lonely experience, but I can honestly say that this community has made it easier. Some nights it has made it a lot easier, and I am truly thankful for that.

Love and Roses to you all.

strongtogether

Hi Folks,
 We are gearing up for the third session of Chemo. It is Dense Dose AC - thanks for that link Giovanna. 
 I am reading a book called The Shock Factor about a young womans fight against TNBC, and I understand her chemo regime was called FEC. 
 How does the oncologist determine what regime to put a patient on? This is probably a stupid question - but is one of them better than the other?
 Actually- what is my access tot he Oncologist meant to be like? I don't want to be ringing her with Questions all the time, but I do feel a bit removed from the whole process. I dont want to spend my time googling stuff and trying to understand medical articles that are beyond me. 
We live in Brisbane and I know there must be other partners going through the same thing as me. Are there any partners' support groups around? 

Afraser

I am sure there will be partners’ support groups around, your day oncology unit may be able to help
if not someone here. The type of chemo will depend on a whole lot of things - cancer type and stage, age, any other relevant physical issues (prior health, allergies, any existing complaints), current trials and research, the oncologist’s own experience of effective or less  effective treatment in a similar case. Even the cancer type and stage can be subtly different. That’s partly why we don’t have the ‘cure’. Yet. One patient with roughly the same kind of diagnosis may respond well to one chemotherapy regimen, another can’t tolerate the side effects. I don’t think anyone is trying to be mysterious, it’s just complicated. I know my own oncologist chose certain chemo therapies for a) the overall cumulative  effect given the two can’t be given together, b) his experience regarding effectiveness for my type and stage of cancer and c) knowing he had one or two options in reserve if the side effects were too difficult. Rather than frequent calls, try making a list of queries and try to cover as many as possible in one visit or call. Your oncologist is the best person to answer these questions. Best wishes. 

kezmusc

Hi @strongtogether,

@Afraser has pretty much covered the explanation.  AC chemo is a very popular treatment and Doxirubicin is one of the most powerful chemo drugs available.  If I remember correctly it is able to kill cancer cells no matter what stage of development they are at.
Rest assured that your onc would have prescribed the best treatment for the type and stage of the cancer. Googling can be confusing and bring up more questions than what you had at the beginning.  I am sure your partner has been explained all the relevant information and passed that to you the best she can.  Personally, I relayed the information to my husband and divulged only what I wanted him to know and nothing he didn't need to.  I figured there was no point the both of us being worried constantly with the names of chemo drugs and possible side effects washing around in our brains.  He gave the support I needed and I dealt with the rest. I found it easier that way, I never took him to chemo or appointments, that way there was only my emotions to deal with, I didn't see the point in worrying him anymore than needed.
  Everbody is different in the way they handle these things.   Maybe ask what she needs from you. She may be perfectly happy (if that's a word you can use in this situation) with the information and treatment she has been advised to have.
All the best with the rest of the roller coaster.

Afraser

Good points from @kezmusc, I too went to treatments and appointments by myself. Might have been different if I’d felt really unwell but I didn’t. A bit of quiet time was good during treatments. Knowing someone is there to help if you need it is wonderful but the how and when is variable. I remember one time when I was particularly fed up with the whole circus and my partner suddenly took me off to a lecture of great interest and lunch. Put my world back in perspective. Best wishes.