Hello and newly diagnosed
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Hi
I like all these ladies have been where you are and to a certain extent still am. It does get better. You will feel more peaceful as we all do. If its any consolation I am 5 treatments in and still have my hair. Yes its thinner but no one else can tell and I feel blessed. With my hair I dont announce I have cancer, I still feel I can keep it to myself. People are amazed but it does happen one other lady who finished her complete round of chemo still had her lovely blond hair. I eat ice cubes the whole infusions and drink lots of cold water the whole time. I run to the ladies constantly. I also drink heaps and heaps of paw paw leaf tea in which I boil fresh. I swear this is why I have not felt sick once or suffered a sore mouth or any tingling of hands and feet . Well I like to believe it is any way. But hang in there we are all there rooting for you all of us on here who share the same road. So your never alone just type in BCNA online and feel the love . Believe me it is one thing that has eased my distress and fear knowing I am not alone and I always have someone on here who actually knows exactly how I feel. Big cyber hug to you.....Your braver and stronger than you know.3 -
I did the exact same thing, lost 5kg just on diagnosis after two weeks. No biggie, I could afford to lose some padding. Step by step you get through.1
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I was very apprehensive about telling my 89 year old mother, but I think it actually extended her life, she was so keen to be a source of support, in spirit at least. Skype or facebook is a great idea as my mother was hugely reassured by the fact that I looked well, was chirpy and cracking jokes. She died late last year but knew that I was fine (5 year milestone later this year, fingers crossed) and our priorities were no longer dominated by treatment or thinking about cancer. She liked my wigs too! As everyone agrees, it's overwhelming at first, but we do find our paths through it all. Best wishes.5
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I did talk to my sister for ages as she has just finished chemo so I do feel better after and I also went back to work yesterday helped to make me feel normal , thanks for all your replies and hugs2
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Great stuff. You will have a unique bond.0
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Hi sfr09, like all here I am sorry that you have had to join us.Like me though I am certain you will find this forum a huge place of support, understanding and honesty. I also have had to have Chemotherapy prior to surgery to shrink the tumour. I have just completed my first 4 x 3 weekly rounds of AC and initially tried the cold caps, my hair started to thin quiet substantially 3 weeks in and along with all the other restrictions related to using them I decided my hair wasn't worth the added stress. My oncologist was upfront from the start though and told me that it was a 50/50 shot at keeping my hair so I went into using the cold caps with that attitude. I am really glad I tried them though and am so happy that we have that option available to try. I start my next treatment in just over 2 weeks, weekly taxol for 12 weeks and Herceptin 3 weekly for 12 months. Surgery is in there in some form just after my Taxol treatment has finished. Chemo can be overwhelming as it is a great big unknown as to how you will respond to all of it, I have been extremely lucky in the first round and have suffered minimal side effects and am happy to report that the tumour is shrinking. The next round for me is scary as again it is unknown, but hey we just have to get in there roll our sleeves up and beat this!
xx
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Hi sfr09 and other ladies,
it's been a long time since I've posted anything having been so busy with treatment, work and life over the past 6 months but your story sounded so similar to mine and where I was just a few months back that I thought it might be worth adding a few things. Like you, I am 56, previously healthy and a big exerciser so the diagnosis was a huge shock. I also have a strong family history amongst both my sisters and cousins but was relieved when I tested negative for the BRCA gene. I had chemotherapy before surgery, 4 times FEC and 12 weekly taxol with three weekly herceptin and perjeta. I was really comfortable with the decision for chemotherapy before the surgery as it gave the opportunity for the cancer to be monitored for its response to treatment. I was able to follow the shrinking of my cancer such that by the end of the chemotherapy it was undetectable on the MRIs and the surgery ended up being very minor. I count myself as being very lucky though of course I never knew any of this back in August when I was first diagnosed and my world was turned on its head.
I can only encourage you to hang in there as the treatments these days can be very effective. The cold caps didn't keep any of my hair through the FEC. it all fell out after the second treatment so I abandoned the caps. I did return to the caps during the Taxol and the hair slowly returned, though sadly without any trace of the reddy/brown it was previously. Weekly caps can be pretty gruelling, particularly where I had my treatment as they also favoured the use of frozen mittens. These were very painful but I started to use some of the lorazepam prescribed earlier by my oncologist to help get me through it. It felt interminable but eventually ended. More importantly, keep exercising! I exercised right through the chemo, jumping on my bike at any opportunity. In particular, I was on the bike before my treatments getting the circulation all pumping and ready for action before the infusions and I believe that this really made a difference.
My heart goes out to you where you are right now. I remember the terror and the darkness which I think we all experience. Be strong and maintain hope as it will get better.
Take care, Fiona xx4 -
Gosh its amazing to hear your stories and thanks for sharing it so helps to read how everyone is going and any tips you have , I do feel better this week as I went back to work and even went for a run today to get some endorphins back . I went to see the chemo place yesterday had more biopsies as I am on a trial so getting hormone therapy at the same time, I will give the cold cap a go and if it doesn't work or I can't stand it I will get a wig , I have a mountain of stuff to read but can only do a bit at a time or I get scared again. I think it will be helpful for me to meet others too so I will look into a support group too down the track , so far all the medical staff ,breast care nurses been great , It was such a weird experience visiting a chemo facility thinking its me soon when I feel so well ! Susanne x0
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@Sam09 I was wondering what Chemo you are doing? is it just Taxol?? as from memory, my Oncologist said if I just did Taxol my hair would just thin. The harder hitting Chemo such as FEC or AC unfortunately is a definite hair loss. Gee makes a big difference as you dont hear of many keeping their hair, so wondered which Chemo. I think its great!
@sfr09 It is surreal at the beginning absolutely! and frightening too not knowing what to expect, and can lead to being very overwhelmed, so bit by bit you will get there. I think the best thing I could say to you is let go of any expectation..My Oncologist told me how it would be 4 FEC 3 weekly and 8 Taxol Weekly. He told me when I would be able to work and not be able. I went in super determined and on schedule for what he said...ummm didnt work anywhere near what he said worst luck. I was very ill with Chemo and after struggling my first few cycles they had to put me in hospital after each infusion of FEC, once I finished and went onto Taxol weekly I was told it would be easier, but it was just different not easier and as it went on I had to give up work, which was very difficult. Once I let go of what I planned and how I wanted it to be and let it play out, I was so much better. Sadly I couldnt even exercise at all, and whilst I now see an Exercise Physiologist now she said some light walking through Chemo is all she recommends to her clients as its a time of healing and she enjoys working with post chemo patients because thats the rebuilding stage. Its been the best thing ever! because they are trained specifically in rehabilitation and there was no way eventhough prior I was reasonably fit, I had to learn to walk again..I wouldnt have seen a PT or gone to a gym. Highly recommend this to anyone starting back to exercise. Hugs Melinda xo0 -
Hi Mel
Yes taxol! Really I am surprised you think hair thinning, all the ladies I have become friends with on taxol every single one is bald. After the third treatment all except myself and another lady who has just finished her 12th.She is just like me and runs daily.
I think its just the luck of the draw really, I consider myself very fortunate and for the fact I have not felt any loss of energy or felt slightly sick. I run 10 k every morning and do weights 4 times a week it keeps me sane. Of course we all have certain things about the treatment we do not like but have no choice to put up with .My oncologist told me before the first infusion taxol was known for hair loss and to expect it and I did. I only hope my hair stays put because I like the fact no one knows I have cancer except me and my close family. Its a need to know basis to me and so keeping my hair for that fact only is important to me. Although my life is far more important than hair loss if that happens.0 -
Sam that's so great! So happy for you, what a bonus! Oh did the others just do Taxol? Sounds like if they lost their hair Taxol must be their other regime? say after FEC or AC? its a beast! My Oncologist said if I just chose Taxol which was the lesser of the evils uuugh, Id be able to keep my hair with cold capping, but doing FEC Id have no hope as automatically lose it. But yeah, just hair! mines grown back no worries at 15 months post, and so great when I think at the time was so hard, but here it is before I knew it! Sounds like youre coping really well, fantastic! I think if I had just Taxol, I certainly wouldve been in a much better shape for sure. Gee, no stopping you, its what keeps you happy, I was too ill to exercise with FEC awful! set me back big time but now working with an Exercise Physiologist and shes fantastic, she's not concerned yes a long recovery for me, but she said I wouldnt have coped with anything through chemo that it was purely a time for healing. Everyone is so different, so its great to hear some real positive stuff of how others cope with it. I say keep doing what works! before you know it, you'll be done! Hugs Melinda xo0
