Struggling with chemo

Hi Marg06, so good to hear that you finished chemo. Hope you recover well and that the mastectomy goes smoothly. Keep active ahead of the mastectomy if you can, it will help recovery. 
with IBC current guidelines are no reconstruction for at least 18 months. This is standard practice for IBC internationally.  The radiotherapy will be done as soon as possible after mastectomy after thee weeks or a little longer, depending on healing. 

Lots of good wishes 

Hello Marg06 

Well that's great news that your Chemo has been completed.- Radiotherapy to follow so all looks good. My only advice regarding Radiotherapy (well from a male point of view - I normally hang out on the Prostate Cancer forum but do check other forums!) is to keep as fit as you can as RT causes fatigue.

Best wishes and I hope all goes well for you - Brian.

Hi Caroline

That’s all good to hear! The surgeon said I’d be starting radiotherapy after about 3 weeks and for about 3 weeks. I’m trying to stay active but I’ve got terrible neuropathy especially in my feet and I’m struggling to get around. I’m hoping this will start to ease off and won’t be permanent. How long does it take for taste to return to normal? I’m struggling to eat as everything tastes so terrible! How far along the journey are you?

Hi Brian 

Yes I managed to get through it, though it was incredibly tough and I was admitted 3 times but I was determined to keep going. I’ve heard radiotherapy is hard going too so I’m trying to get as fit as possible before surgery but still feeling quite awful. 
Thanks for your kind thoughts and I hope all is good with you. 

Hello Marg06 

Thanks for your reply - yes I am in a good place with my cancer - another 12 months on Hormone Therapy (it's hard being a woman!!) and that's me done - I hope!!

You say you feel "quite awful".  Sometimes it's just good to talk, I hope you don't mind but may I suggest:

* MacMillan Buddies - This is where you have a telephone buddy and they ring you once a week to see how you are doing - here's the link for the details:

https://www.macmillan.org.uk/cancer-information-and-support/get-help/emotional-help/macmillan-buddies

* If you are feeling "down" and just need some re-assurance (as we all do sometimes) give our helpline a ring on 0808 808 00 00 (8am - 8.00pm 7 days a week). They are a cracking set of people and they will help you through any issues you have.

* Is there a "Maggies" near you? They are cancer support centres, you can drop in have a chat and they offer plenty of support and courses to help you through your treatment and beyond. To find your nearest 0300 123 1801, or e-mail: enquiries@maggiescentres.org or on the web www.maggiescentres.org

I hope the above helps - If I can do anything else for you let me know.

Best wishes - Brian.

Hi Marg06.

I was diagnosed in July with IBC, HER2+ in left breast plus spread to left lymph nodes. I have completed 4 rounds of Docetaxal, Pertuzumab and Trastuzumab on 21 day cycle. Have now had 2 of 3 cycles of EC. The first 4 rounds I got bad side effects but was able to cope with it. Minimal hair loss. EC had worse side effects and bad hairloss. Major shed today despite cold cap. I am still ploughing on though as there is an end date in sight. 

I will be having a double mastectomy in January followed by more chemo and radiotherapy. 

My coping mechanism is to view each step as getting nearer to the end of treatment. My scans show a really good response, so despite the awful side effects, it is working and there is an end to the treatment in sight. Have you tried any of the counselling available through Macmillan to talk through the emotional side. I have to admit it is a struggle talking to friends and family, as they just don't get it. 

Listen to your body and rest when you need to. You are going through a hugely traumatic time so forgive yourself when you feel low. Its unavoidable! Tick of each treatment and count as a major achievement. From my first treatment, I can't believe I only have one to go pre surgery. Hang in there, you are probably stronger than you realise

Hi FushiaP,

I was diagnosed with IBC with HER2+++ in my right breast on October 4th this year. Luckily with no spread to lymph nodes. My first treatment started very quickly to stop it speading and began only 4 weeks later on the 1st November after I'd completed all necessary scans and Oncology appointments to discuss a treatment plan. This was only 7 weeks from initially visiting my GP about my concerns about the extreme pain I was experiencing in my breast but none of the other typical symptoms. It's been an absolute whirlwind and I've still not got my head around it all yet. My Oncologist has assured me my chemo treatment although aggressive will be curative due to my cancer being caught at an early stage and not having spread. I will need a mastectomy with gland clearance and 35 days of radiotherapy afterwards to make sure no tiny cells have managed to survive. I'm told this is usual procedure for IBC and the whole process will take 52 weeks excluding eventual breast reconstruction surgery.

I completed my second round of my 3 weekly  chemo cycle yesterday (22nd Nov). My treatment consists of Docetaxal, Phesgo and Carboplatin and I have a multitude of drugs and injections to take during the 3 weeks inbetween. Due to a history of a previous blood clot following neck surgery a few years ago I have daily injections of anti-blood clotting medication along with injections to boost my immune system due to developing Neutropenic sepsis, Hepititis and Gastritis 4 days after my first treatment 3 weeks ago which resulted in 2 hospital admissions during that 3 week period. It was so not what I was expecting to happen and at the time I doubted my ability to carry on with the treatment due to feeling and being so poorly. I was unable to eat or drink and vomitting massive amounts of bile resulting in a 4 kg (9lbs) weight loss in just one week.

Prior to this I was feeling so positive and grateful for the quick response from my breat care team. I recovered only just in time for yesterdays chemo session and I'm feeling positive again about continuing my treatment though a little apprehensive. I know if I complete my full 6 cycles of chemo my cancer should be cured.

My hair has started shedding. I was warned my chemo will result in complete hair loss but consider this a small price to pay for a cure. I have an appointment at a specialist wig salon next week because I can't imagine myself living with no hair and only my husband, daughters and very close friends know about my diagnosis so need to keep up appearances. I don't want the pity of my neighbours and people who don't and can't understand what I'm going through.

I have a long road ahead of me but whatever happens I'm determined to get through this. Similar to you my coping mechanism is to view each step as getting nearer to the end of treatment and a cure. If each chemo sessions goes ahead as scheduled I should be finished in time for the birth of my first grandchild at the end of February next year and have time to enjoy her first few weeks of life before breast surgery then radiotherapy. I'm looking forward to the future when I'm fit and well again and can do all the things I'm going to miss out on this next year. I believe positivity is the key to surviving this awful situation I've found myself in and realise there will be tough times ahead but I'm determined to get through it. 

I wish you well on the next stage of your cancer journey. Stay strong and stick with your positive thoughts.

Sending best wishes to you and everyone else whose been diagnosed with this rare breast cancer. xx

Hello Snugglecat 

What a very positive post - I love your positive attitude - it's people like you who can inspire others on a similar journey to take this cancer, get a grip of it and have the strength and courage to get through the trials and tribulations that come with it.

I wish you well on your personal journey and thanks for posting.  .

Best wishes - Brian. xx

Hi FuchsiaP

Thanks for your response, it’s so good to hear from other women with IBC. My cancer has also spread to the lymph nodes and I have two suspect areas that are probably bone metastasis but no one is sure yet so I’m waiting for the next pet scan. I think the problem I had with chemo was because it was weekly meaning that there was no recovery from side effects in between sessions it just got worse as time went on. I was determined to complete it and counted off each session but it was very difficult. I am wondering about having some counselling, I did have some when I was diagnosed with thyroid cancer and that was helpful. You are right about listening to your body as now chemo has ended I find myself being very impatient to feel ‘normal’ again but I’m still very much having the physical effects of chemo so I am trying to be a little kinder to myself. I seem to be slightly ahead of you in the journey, my surgery is in a few weeks; then radiotherapy soon after. 
Best wishes to you for the rest of your treatment. 

Hi Brian 

Thanks for responding. My comment about feeling awful was about feeling physically ill with the chemo side effects which I think I’m probably going to feel for a while to come. Thank you for the information about the buddy services that MacMillan offer, I wasn’t aware of this and I’d love to have someone to talk to. I’d reached out to another charity who offered a buddy but they said that if my cancer had metastasised I wouldn’t be able to have a buddy any longer which seemed a little cruel. They never got back to me with a contact so I’ll definitely try the link you sent. Thank you