That must be a relief Gigi not to have to go through that but a worry about what comes next and how they will treat it. I presume there must be a plan on how to keep you healthy without giving chemo? Wishing you all the best and a less stressful time.
I had my appointment with the oncologist last night and explained my concerns in respect of Zoladex and she has agreed to postpone/cancel the treatment. The Zoladex was supposed to supress the working of the ovaries but as i am 54 and had irregular periods and all the other menapausal symptons i was obvioulsy very close before chemo stopped my periods. She now plans to do a blood test to check if the ovaries have restarted after surgery which may mean no need for Zoladex. There is also the option to remove the ovaries if needed which i think i would opt for rather than risk the heart problems. I think the relief and the cooler weather actualy gave me a better nights sleep for the first time in weeks.
All the best to you all and your help through my melt downs.
This is such good news, Gygi! Sounds like your team is really onto it. Like Michelle, I’m a little jealous that you have finished with chemo but only in the nicest way possible - longing to have finished too.
Thanks for all the input on bc nurses. When I had my rant last night it seemed an important issue. I didn’t sleep well (full of steroids) and kept running over things again and again. This was actually quite helpful, amazingly. It meant that then, after distracting myself with a cup of tea & a crossword, I was able to go back to bed and sleep. What had made a stressful day even more horrible was behind me this morning and not important at all.
The most important thing is how well treatment is working. The rest is details. This forum is brilliant for making me feel better after the hated chemo. It’s great when I see good news on it to celebrate.
Glad we all have somewhere to rant and moan where we all completely understand where it is coming from. My bc nurse is lovely but seems to be associted with the breast surgeon and not the chemo but when i was in a real mess i emailed her and she got things sorted. I haven't actually seen her much and i don't have a phone number but emails seem to be dealt with within 24 hours usually.
I have had so many times i have been chasing around hospitals for medication on the leaukemae side of things for years. It is an expensive specialist drug they have to order and i get three months at a time. Each time i am chasing if it has been ordered, received and where is it. On some ocassions they don't know and it has dispensed to a ward or i get a phone call from a ward saying we have this and don't know why. Seems a total chaotic system.
I did get answeres to my questions yesterday evening and yes i agree Michelle i need to stop the research as it just makes me more worried. I will go to the oncologist informed and take it from there.
Gigi i have been advised that there are interactions between morphine and my othere medication so it is best to stop the leukemia medication before the DIEP until afeter i am off the strong painkillers. How long did you need to take the stronger prescribed painkillers? I hope you get the chemo answers quickly as it must be a worry. I am sure there are other drugs they can try.
Oh Gygi, this is awful. The people treating you are supposed to know what they are doing. For you & Christine it’s been one long struggle just to get a clear response from these professionals. Keep buzzing!
I get so fed up with the fairytales I’m told every time - nothing as serious as what you are enduring but disconcerting all the same. Like that one about having an assigned breast cancer nurse. I saw mine for the first and last time before surgery in February. She has not been contactable since then and I’ve discovered she is leaving. Guess I fell through the cracks. I’ve spoken to other nurses on the line and they have been kind and helpful. The last time I rang, I got the bum’s rush, very politely. I was told to ring the oncology hotline instead of bothering them. Still don’t have this assigned nurse myth. Today was told the docetaxel would be infused slowly. It was rushed through in under an hour with a little bit still left in the bag. Half a bag of saline, quick flush of the picc & I was booted out to get my meds downstairs in the pharmacy. Another fairytale. They had been sent up to the ward. Dragged myself up the stairs again. Felt I was being a nuisance. I hate the place.
Sorry for another rant.
Thinking of you, Christine, at this very difficult time. A second oncologist’s opinion would seem to be needed. You should not be facing problems like this. I hope that when memories of the rain & discomfort recede, you will have good memories of the concerts.
Chemo is an absolute brute. Had my last but one today. Was I happy? As grumpy as I’ve ever been. Hospital sucks my brains out as I walk through the door. I know what’s coming. Thanks for your good luck wishes, Michelle. I do hope it’s all going ok for you. Had a conversation today with another patient & we agreed that one day people would marvel that, back in the bad old days, they poisoned cancer patients as an accepted treatment, like lobotomies used to be.
Thanks Gygi. Tired & nauseous is so hard to bear. I’m trying to go for the salads but, like you, I prefer ice cream.
The moment my OH went out today, I cleaned the kitchen & then went for a walk. It worked off some of the grumpiness. I must be horrible to live with.
The haematologist was also not happy as he says the oncologist should talk to the pharmacist but he has done that but not yet got a responce. I just feel upset and let down today and the more research i do the more scared i get. Both Xoladex and Letrozole afects the heart in the same way my leakeamia medication does so i would be surprised if three drugs putting stress on my heart is a good idea on top of surgery. I will ask more tomorrow and may suggest that we wait for the Zoladex until after surgery when the position has been discussed by every one.
In a very emotional place today for some reason which i guess is partly hormonal due to chemo shutting everything down but everything is getting too much of a worry.
Good luck everyone for this week and i hope the chemo is less than 8 hours gygi this week. you were brilliant to be able to take the cold cap for that length of time.
Another week of hospital appointments. Haematologist today and see if he has checked about all the interaction on the medication. A quick google search by me has bought up a big problem with Zoladex and my currents meds and strong indication i shouldn't have it but then google is not an consultant and may be wrong. I see my oncologist tomorrow anyway so will see what she says. I need to know she has checked this and if not i may look into changing oncologist as it scares me that potentially dangerous complications haven't been considered. It is so frustrating that no one talks to anyone else and i am left doing all the work. Surely that isn't right.
A weekend of concerts has left me shattered. Michael Buble on friday night was a late start after standing in pouring rain with thunder and lightning for over an hour. Eventually found a pharmacy on site selling rain ponchos but they said they had run out until my daughter played the cancer/chemo card and they found a few more. I was a bit worried about the risk due to low immunity and being soaked through but so far seem ok. The concert was great but all the sitting on the ground before the rain for Banarama and Van Morrison left my bones and muscles aching. Herceptin i assume as it seemed sore than i would have expected. Stood more for Bruno Mars and took a blow up cushion to soften the hard ground. Lovely to be out but felt so tired and so many aches i felt like some one 20 to 30 years older which did get me down.
Moan over for now so I hope this week is a good one.
Thank you, Michelle & Christine, for your kindness. It’s such a relief that I am not alone in this.
Things look good for your reconstruction, Christine. That you have to get the information from the leukaemia consultant seems odd but I guess each hospital has its own methods. I hope you don’t have to wait around for long.
Hope the weekend goes well for all of us.
All the best Dorabell. Time goes very slowly at the end when you want it all over with, or this stage anyway. You are tough and can get there so don't forget it. we are in this together and we will all make it out the other side. Yes chemo brain is horrid. I start a conversation and stop part way through thinking "Where was going with this?" I need to make lists for shopping or i come home without the main thing i went for and yes words don't come to me as they should. It is best just to laugh it off when you can.
My appointment today with the reconstruction surgeon went well. CT scan shows nice blood vessels in the right place so we are all systems go and i will wait for a date. There are still confirmations needed from the leukaemia consultant and the surgeon has left it to me to get the answers and then forward them to him. Seems strange but i am not surprised.
Gygi thank you for your offer of a chat and i may take you up on that in a week or so but you need to recover a bit first i am sure. Hope you are getting some rest as your body adjust to the new regime. Hope Michelle you get some energy back too.
Thanks for your good wishes, Michelle. 5th chemo out of 6 on Monday. Dread it.
Today was going to be doing enjoyable things. Chemo brain wrecked that. Left half what I needed for the event at home. Very upset with own stupidity. Nice chats but felt total idiot. Made myself go shopping for first time in weeks & was exhausted. Back to bed. Am taking OH out for birthday meal tonight. Would rather stay in bed.
I loathe the way cancer, and its treatment, spreads chaos in my life. I think I’m doing fine, back to normal as it’s the third week since chemo, and I’m brittle as glass. Being closer to the end of chemo makes me impatient, as well as bone-weary with the process.
Rant over. So glad herceptin went ok for you, Gygi.
Oh dear Gigi. All i can say is that i am thinking of you and i hope next time it is not so long. This stuff is so horrible and the focus is on the end point and the future.
With regard to surgery i think we all different and all the surgeons are different. When i had the lumpectomy years ago with all the lymph nodes taken i had a drain and lack of movement in the arm but this time, on the other side, i had only 3 nodes removed and the scar is in a different place but i had very little restriction in movement, no drain and the nerve pain went within two weeks. I am sure your surgeon will let you know in due course what to expect.
I have my appointment tomorrow with the reconstruction surgeon to go through the CT scan and finalise the date. Looks like the first week in August but two surgeons need to check their calenders and i will wait and see. I have just emailed consultant who deals with my leukaemia as certain blood thinners and painkillers can't be used with my current medication. I have no faith in the communication between the two so have taken it into my own hands. My tablets say do not use fentanyl which is a post op painkiller but i know i was given it last time so i need to know if this is ok this time. Just another thing to panic about...
Anyway i have been to the gym again today and my energy levels are improving really well. I do have aches in my joints which i think are Herceptin side effects but that seems to effect me at night more than the day.
Love to everyone and thank you for all your support. I am so glad i found this site and forum.
Hope you had a good night’s sleep, Gigi, & it all goes well with the Herceptin today. 8 hours cold-capped on a drip must have been dreadful. The things cancer brings with it!
I was interested by your description of being down around days 6-8, Michelle. The same thing happens to me. On day 11 it’s as though an “ok” switch has been flicked and I feel better. Not normal, just better. Then I cram in as much normal stuff as I can into the time remaining before next chemo and end up exhausted. The fatigue has been like hitting a wall.
I had a WLE, not a mastectomy, but I had the lymph nodes removed. Afterwards there was numbness and nerve pain down my arm but that is gradually getting better (surgery was in February) and I now have a full range of movement in that arm. The pain was never bad enough for me to take the codeine they sent me home with. I’m aware that everyone’s experience is different but I hope this helps.
Its good to read of you coming out the other side of chemo, Christine; gives me hope. I hope you are not put off by the DIEP pictures. It’s your own body that matters. I couldn’t believe what a brilliant job the surgeon had done on me and I hope the same is true for you.
Cooler today. Feels good.
Gigi. So glad you are having a good day or too as you deserve it after all you have been through. Good luck with the paclitaxel too. If you are having 6 weeks worth then you should hopefully not have the accumulative problems. Most of mine didn't set in until after that point and you deserve one that treats you better and gets you to the end point.
Dorabel i understand the being terrified bit especially when the sleep is hard to come by. I have left the chemo worries behind so now i am terrified of the surgery. I just need to see beyond that i think. I did google DIEP and found some before and after pictures that were not great and had to pull myself up as i have seen pictures of my surgeons patients and they were a pleasant surprise. It is more the surgery and first few days that scare me the most.
My itchy chemo rash is defintely improving now but it did have to use prescription anti histamines and hydrocortisone cream for a few weeks as it was driving me mad. Now i am back to the E45 only and the itch has gone. Just the skin colour needs to return to normal now.
A couple of active days have left me drained toaday but that could be the heat too. Yesterday i went to the gym for another gentle session then met up with my personal trainer for coffee. He has been in touch all the way through and kept my spirits up. He also has a cleaner that he recomends so hopefully that is sorted. Then i went for pizza with a friend and although my appetite isn't back to normal i did manage a starter and main with wine.
I have tickets for for Hyde Park next weekend for Michale Buble on Friday the 13th then Bruno Mars on the Saturday. Hoping to be well enough to enjoy them and sing along with my lovely daughter. I am looking forward to it but hope the heat is not too intense.
All the best for a lovely weekend and a win for England.
That’s good news Gygi. I do hope it’s a gentler treatment than the previous one. How wonderful, to have the end of chemo in sight.
I’m guessing mine will finish some time towards the end of August but that depends on how well I tolerate the docetaxel. I loathe the side effects, including the latest: spreading skin rashes and nosebleeds (spotting rather than gush). At least the earlier problems are easing.
I’m really interested by what you say about others’ reactions, Michelle, especially the lack of understanding. I sometimes feel such a fraud, though. The public face is brave little canceree being positive (yes it’s horrible but I’m feeling better today). Inside I am terrified, especially at 3 in the morning when I can’t sleep.
I’ll let you know if I find out anything useful about counselling. What I’m trying to arrange is through a local charity. The setup is that you are encouraged to choose 4 treatments which are free, after which a donation is requested.
Hope you are all ok in the heatwave.
Congratulations, Christine, on getting back to the gym. I think 20 minutes is really impressive. It helps to have your perspective post-chemo; makes me feel there is an end to the grind. Like you I have an itchy rash, which has started since the first docetaxel. E45 itch cream helps a bit.
I’m so glad you find the book I recommended helpful, Michelle. It reassured me I wasn’t going mad. Thanks for asking about the aches and pains. I’ve kept off the codeine, though I will ask the oncologist about that for the most painful days. Today, i began to feel a bit better. Water stopped tasting disgustingly bitter. The OTC Imodium actually worked. I managed a walk. I’ll say this about chemo, it makes you appreciate the days when you don’t want to crawl into a hole and drag it in behind you.
It’s good news that you are feeling better today, Gygi. I hope the appointment at Guys tomorrow is helpful with regard to a new (and better) plan. “Fatigue” can sound like nothing much - until you have it and then it’s brutal. I do hope the new plan addresses your fatigue as it is very hard to bear.
Hoping the week goes well for all of us.
I just need to say that whatever we are told are the start there is no easy or gentle chemo out there. we have all suffered more than expected and i think we should be given more real details in advance. The details i had said that i may get a few of the list of side effects but i think i got the majority of the them by the end of the course.
I hope that everyone is in less pain today. I thought bruising a sensitive toe was painful enough and i can't imagine how painful dilocating one would be. Toes seem to hurt more than expected and are so easy to knock when you are full of chemo fog.
I found i wasn't sick or queasy until the very end of my chemo but i didn't want to eat a full meal. I ate small meals and sometimes had to do it as i knew i should rather than wanting to eat. I also had a box of custard creams on the kitchen table and the odd one of those was a nice treat. I still didn't eat them all in one go as i would have before chemo. I think over time you find what works for you and with taste changes this can vary as you go through treatment.
I had my first herceptin injection last week and so far the side effects have been minimal. A thread on here shows alot of people have problems with them and i started to think that may be the chemo side effects were covering the herceptin ones. I know i am not out tof the woods yet but i am now 4 days gone and have just had a few aches in muscles and joints but not to a significant extent. Looking forward to a break in hospital appointments as the weekly chemo and blood tests were a constant reminder of what was wrong.
Today i went back to the gym! First time in about two months and i just did 20 minutes on bike and a few stretches etc but i think that was a good start. Energy is still low but it is improving very slowly. I still have the allergy rash on my arms but the itch is decreasing. Wondering when the body hair will return but in no hurry.
I know we all need to trust the professionals and their opinions as we go through this but husband did remind me that it is my right to get answers and to refuse treatment. If side effects are greater than the benefit then it is time to stop.
Hope you all have a good week.