A question for those who have already had their first session with cold cap:
I keep seeing so much about being super hydrated the day before and during chemo day, drinking a ton of fluids, which I think is always great advice anyway, and I do try to drink lots of water every day.
But all that water has to come out the other end 🙂 and so I do make fairly frequent visits to the loo 🙂
Presumably though, with drugs going in slowly and being wired up to a giant fridge for the cold cap for what, 5 hours or something?, you can't exactly pop to the toilet whenever you want to?
Has anyone been able to be unveiled mid treatment for a wee? Or is that a total no no?
Dear Edinburg ( and group)
I thoroughly recommend the ‘Calm’ app . I find Tamara Levvitt’s soft spoken , guided meditations excellent.
I have been using the app since before my diagnosis ( to reduce stress levels) and now this is part of my morning routine.
I highly recommend her.
Lovely weekend to all x
Your eyebrows look amazing! I got mine retouched on Thursday. I got told I may not be able to go for my touch up 😔.
I understand about someone like you, it definitely helps “I’m sending you a huge hug”.
In regards to supplements, I feel food can help you too. Look at this lady’s website when you have a chance https://dawnwaldron.com (not today, as you’re enjoying the weekend).
I also have the CBT oil, doctors have ruled it out. But, a couple of ladies on here said it helps. So, I will definitely try it if I need too lol xxx
I usually take "wellwoman" supplements because I'm veggie, and I definitely find them helpful (more alert, skin looks better, nails stronger etc etc)
As they are just sold on the shelves in Boots I figured they are fairly mild but my chemo nurse has insisted I stop taking them.
About the eyebrows if you had microblading then it's normal for them to fade a little after a few days. Have a lovely night out with your friend. Eat whatever you like and enjoy. X
Eyebrows are interesting... check out https://www.facebook.com/182222635177894/posts/2124647370935401?sfns=mo
hope that works! They’ve faded so much since Sunday I actually liked what it looked like but now I can barely see it...
Finally someone like me! I wish there was no one like me but there is. I’m trying to forget what I don’t know and enjoy the weekend!
I must say I’m rather confused about supplements the team basically said don’t take anything but that seems extreme? My best friend swears by CBD to help calm him with his depression and other issues but that’s been v clearly ruled out by the docs 😕
Thank you I have lots of friends and colleagues - all my oldest friends and family are hundreds of miles away in England though and so I have a lot of support here but my family are so far away. My husband is here and we had not been getting on so we’ll so it’s an even stranger dynamic now.
I was prepared and got stuff last weekend after I was told I’d be starting in 2/3 weeks - turns out it’s 10 days but not complaining!
Good morning Edinbird,
How are your eyebrows?
Im sorry to hear about your liver, I hope that it hasn’t spread. If it has, I don’t think you could undergo chemotherapy on Monday because of the drugs. So, that is definitely a positive xx
My journey is very similar, mines moved from biopsy, to diagnosis to treatment on Monday too all in 4 weeks.
My sister also has MH needs, and she is the same as your friend. For me, at times it’s overwhelming, as I’m dealing with my own emotions.
Im also 39, this year I had so many plans. Just like many other ladies in this feed. My positive story is that this is a new journey for me, and I’m will embrace new hobbies, meet new people and look after myself. I’m also grateful for my friends and that even though I have a tumour, I’m still healthy and got a lot to live for.
I also feel coming on here and talking helps, as we are all going through similar journeys and it helps to share as we are not alone.
On Monday, I’m taking mints, a flask, a good book, food!, I’m going to buy anti sickness wristsbands. Also keep hydrated, drink at least 2/3 litres of water before and after Monday. No eating in restaurants for the next 7 days, food always well done. If you eat fish, frozen is better than fresh, no shrimps.
Im also taking tumeric tablets and omega three.
Anything else ladies? Xxx
This is an formative read that discusses the most common side effects. Not looking forward to any of them I must say. But it was reassuring to also read what can be done to help alleviate them Gosh for someone who does not take any tablets I am soon going to be rattling.
Thank you so much Sarah
The registrar called me about 6pm Thursday to tell me about the inconclusive CT and so I’m waiting on an MRI date assume really quickly. But starting chemo anyway.
Had a missed call from the hospital yesterday but no message left so that’s not helped!
Everyone is being wonderful and I will handle what I’m dealt but it’s the impact on everyone else that is worse right now 😞
Night out tonight and then seeing my best friend tomorrow - and then time to shrink this damn thing (that is only the size of my thumbnail!! How is something that tiny causing so much trauma?!)
Oh this is such a worrying time, and it seems to have just got harder for you. Try and focus on what you need to achieve in the next few days first. I know it's easier said than done. Try to focus on the practicalities of preparation if you can. Buy nice food, fill your freezer, get the recommended items needed to help with side effects, loads of advice on those on here from the girls. The problem today is that the medical profession is so open that they tell you stuff as soon as they know themselves. Sometimes like now with you that raises patients stress levels because they get told enough to scare but not enough to fully explain what is really going on. Please take care of yourself I know it's hard to see others distressed by your illness but you need help and support too. I hope you have some other friends you could call onas well as the friend and sister you have mentioned here. Good luck for Monday I am starting on Wednesday. Let us know how you are doing. This is a wonderful forum to express your worries, anxieties and struggles. It is also supportive and uplifting. Sending a virtual hug to you. Marie x
Oh, Edinbird, welcome.
You must be worried sick and not being able to confide in your closest people must make it so much worse, like you have a horrid secret 😞
First off, when do you find out exactly what's going on? Have the docs done further tests?
I get what you mean about everyone in clinic seeming older. I've got 12 years on you myself but I've also found myself to be the baby of most waiting rooms, and it kind of increases the "why me????" feelings a little, doesn't it, because it feels like we're not "due" this yet.
I always used to joke about the huge list of hobbies I have set aside to pick up when I retire, as I have no time for them while I'm working full time. And I'd say "I'll be bloody annoyed if I drop dead on my 67th birthday!!!!". But I never thought that was actually likely, everyone in my family has lived to a ripe old age. Now im wondering if I'll even get to retirement age at all!
Anyway, this isn't turning into quite the cheer up message you wanted!!!
Please feel free to unload whatever is in your mind to us lot, because you have to talk to SOMEONE. It's way too heavy to keep it all bottled up.
And let us know how you get on x
So I’ve gone from first breast clinic to chemo on Monday in the space of 6 weeks. I’ve dealt with everything in my stride until Thursday when I was told my scans showed something on my liver - dunno what. I’m triple negative and now I’m petrified as if that has spread then what hope is there? I absolutely couldn’t care less about the chemo now, doesn’t frighten me in the slightest now this is hanging over me. I know it could be nothing but I’ve had no good news except a clear bone scan and I can’t bring myself to be positive. I’m 39 btw - I’ve not seen a single young woman in the cancer centre and that gets me down too.
Everyone around me is being great although very few know about the scan result. My best friend has mental health issues and I can see the effect this is having on him - he’s crying daily at the thought of losing me and my sister with a small baby miles away is crushed without being aware of the scan stuff.
I don’t want to go into chemotherapy unprepared because of the other worries but getting poisoned by drip feels like a day out now!
Any positive stories to at least cheer me up gratefully received xx
Well, I lived in HK, UK, US before and am currently living in Canada. Can read English, Chinese and some Spansh.
Found and want to share an interesting article about chemo side effect management, which was written by a physician working in the cancer general hospital in Taiwan. I have used Google translate to convert from Chinese to English.
"To talk about the side effects of chemotherapy, you should first mention the chemotherapeutic drugs used in breast cancer chemotherapy. Common chemotherapeutic drugs for breast cancer include anthracyclines drugs (such as epirubicin, doxorubicin, liposomal doxorubicin, etc.), taxanes drugs (such as Paclitaxel, Docetaxel), vinorelbine (brand name, Navelbine), Capecitabine (trade name Xeloda), these are the main drugs commonly mentioned in breast cancer chemotherapy, and other auxiliary or posterior drugs include: 5-FU, Cyclophosphamide, Gemcitabine, Cisplatin, Methotrexate and so on. Although the side effects or toxicity caused by various drugs are different, there are also acute and chronic differences, but basically many common side effects are common, and the treatment methods are also the same, including leukopenia, anemia, nausea, vomiting, hair loss, Constipation, neurotoxicity, weakness, stomatitis, mouth ulcers, skin rash, hand and foot syndrome, etc. This article will select several of these items for illustration.
Leukocyte reduction and anemia
In addition to killing cancer cells, chemotherapeutic drugs can also cause temporary bone marrow suppression, resulting in a decrease in white blood cells and anemia. White blood cells are the most important weapon for humans to resist infection, so when white blood cells fall, human resistance to infection will also decrease. However, in general, when the total number of white blood cells drops below 1,000 particles/ul, or when the neutrophils in white blood cells fall below 500 particles/ul, the reduction in resistance is particularly noticeable, and patients are therefore susceptible to pathogens ( A fever such as bacteria, viruses, molds, etc. This kind of fever is especially called a neutrophilic low fever, which can be regarded as a tumor emergency and needs immediate treatment. Among the drugs used in chemotherapy for breast cancer, drugs that are more likely to cause leukopenia include anthracyclines drugs, paclitaxel, etc. This symptom is also related to the dose size used. Generally, the minimum time for white blood cells is about 7-14 days after chemotherapy. After 14 days, the white blood cells generally gradually rise back. By the third week, the white blood cells of the patients will return to normal, and the patients can accept the next time. Chemotherapy. The effect of inhibition of chemotherapy on the bone marrow of patients varies greatly depending on the constitution. However, in general, patients with older or previously longer-term chemotherapy will have a worse degree of white blood cell decline. In general, the physician will schedule the patient's return visit to track the number of white blood cells based on the medication and dosage received by the patient. If the total number of white blood cells has dropped to less than 1,000/ul, or the neutrophil has dropped below 500/ul, the patient can use white blood cell growth hormone (G-CSF) at that time. It can be used prophylactically after the next chemotherapy. In the period of low white blood cells after chemotherapy (especially between 7-14 days after chemotherapy), we also recommend that patients keep the mouth, skin, anus, etc. clean, eat clean cooked food, pay attention to nutrition, avoid going In places with a lot of people, avoid contact with infected patients (such as a cold), so as to reduce the chance of infection caused by white blood cells. If you have a fever, or have different discomforts than in the past, seek medical advice immediately or go to the emergency room.
Another result of chemotherapy-induced drugs that cause bone marrow suppression is anemia. Anemia can further cause weakness and fatigue, but the anemia caused by this myelosuppression is temporary and does not endanger life, so as long as it is not too serious The general practitioner will pay attention to it in a continuous observation manner, and will gradually recover after the completion of the chemotherapy treatment. Anemia is classified by the level of hemoglobin. Generally, when it is less than 10g/dl, it will affect the physiological function of the patient, such as the aforementioned weakness, fatigue, gasping during activities, etc., especially when it is less than 8g/dl. Significant impact. The general practitioner treats the patient with a blood transfusion (strong red blood cell solution) or erythropoietin when the patient has a cardiopulmonary effect at less than 8 g/dl or less than 10 g/dl. . However, the above-mentioned methods are avoided in the case of patients who are expected to be cured. Therefore, the general recommendation is to pay more attention to their own nutrition during the chemotherapy period of the patients, and to avoid anggravating the anemia due to poor nutritional status.
feel sick and vomit
According to statistics, the most important reason why the average patient is most afraid of chemotherapy is the fear of nausea and vomiting caused by chemotherapy. Chemotherapy drugs are classified into high-risk vomiting drugs (more than 90% of vomiting), moderate-risk vomiting drugs (30-90% vomiting), low risk, according to the percentage of nausea and vomiting caused by the use of anti-emetic drugs in the past. Toxic drugs (<30% chance of vomiting). Among breast cancer chemotherapy drugs, high-risk vomiting drugs include cisplatin, while moderate-risk vomiting drugs include anthracyclines drugs, cyclophosphamide, and oral vinorelbine, while others are low-risk vomiting drugs (such as Paclitaxel), but if multiple drugs are used in combination, such as commonly used AC (doxorubicin plus cyclophosphamide) or FEC (5-FU, plus epirubicin, plus cyclophosphamide), it should be considered as a high-risk vomiting drug.
In recent years, there has been great progress in the effects and types of antiemetic drugs. Commonly used drugs include 5-HT3 receptor antagonists, such as Kytril, Navoban, Zofran, Aloxi, Setoral, etc. These drugs have a good effect on acute vomiting within 24 hours, and the effective rate is above 50%. Delayed vomiting that occurs 24 hours later often occurs in patients who use anthracyclines drug and cispatin. There are also effective drugs available. These drugs are called NK-1 receptor inhibitors. Such as EMEND (aprepitant). In addition, health care workers may use steroids, sedatives, or other traditional antiemetics (such as primperan) to enhance antiemetic effects depending on the chemotherapeutic drug. Among them, it is worth mentioning that steroids, in addition to their own antiemetic, reduce the side effects of chemotherapy, can also enhance the effect of other antiemetics. Therefore, sometimes for low-risk vomiting drugs, physicians will only use steroids as the main antiemetic drugs. If the patient receives chemotherapy and has used the above drugs, there is still a feeling of nausea. Usually, a small amount of meals can be taken to avoid over-satisfaction and rest, which can also reduce the occurrence of nausea and vomiting.
Stomatitis and oral ulcers
Chemotherapy drugs can also cause oral ulcers, including anthracyclines drugs and paclitaxel drugs. Once it occurs, the patient can gargle with water or a mouthwash containing a disinfectant (such as chlorohexdine) or an anesthetic. Alternatively, a topical adhesive containing steroids can be used to relieve pain (such as Nincort). The latest drugs include The intraoral spray of epidermal growth factor (EGF) has a good effect. The physician will also pay attention to whether the patient has a mold infection (white plaque), or a herpes virus infection, if necessary, antibiotics, anti-fungal drugs, or anti-viral drugs. If the patient suffers from stomatitis and ulcer pain, he or she can also choose an oral, injection, or patch-type analgesic drug, depending on the patient's convenience.
Among the chemotherapeutic drugs for breast cancer, drugs that are susceptible to neurotoxicity such as paclitaxel, and cisplatin drugs. In principle, there is currently no good way to prevent or treat this side effect. Patients usually recover (partially or completely) after chemotherapy. Patients can be supplemented with vitamin B supplements, or supplements containing glutamine (such as fast-acting therapy) may be considered.
Patients with a variety of treatments, reduced exercise, hospitalization, changing the environment, mood changes, coupled with chemotherapy drugs and antiemetics, the use of morphine analgesics and other factors, is very prone to constipation problems. This problem is easier to solve; patients should eat more fruits and vegetables, more activities when they do not need to stay in bed, you can also consider using some soft stools, such as magnesium oxide, senna, etc., so that constipation problems can be solved as soon as possible, it is easy to return to normal .
Chemotherapy is an important treatment for breast cancer treatment. Although it prolongs the survival of patients and improves the recovery rate, it also gives patients some different side effects. In principle, such as hair loss, white blood cell reduction, anemia, vomiting, stomatitis, and hand-foot syndrome are all reversible, and medical staff will try their best to use the above treatment to assist patients. "
Agreed flowers thing Is odd but I looked online and it came up straightaway. Oh well my pal is a gardener and carried on during chemo so it’s up to us. I will still have them in the house anyway!🌷🌷🌷
No way, I can’t believe that Sissy60, oh well I’ve been sorting flowers out all week 🙁
I do know about raw foods though, as in seafood, shellfish & undercooked meat, runny eggs also blue cheese & un pasteurised cheeses, all my favourites 😂😘😘
Thank you Stargazer1, it was lovely here in Durham. My daughter is really scared of chemo, but she is upset because she should have started chemo a week ago and she was left to her own devices, bleeding black blood and fluids for a month.
She is afraid that chemo will not be effective due to this, the consultant says it is fine, the oncologist says she should have started already.
Unfortunately most people, including me, don’t know that about flowers and I have received more in the last two months than in the last 10 years but I have survived so far😂.
I do eat raw foods (not eggs) but make sure everything is washed, I also stay from unpasteurised cheese and pate - it’s like being pregnant again!
Thankyou for the tip about taking the injection out of the fridge I hadn’t been told that or about using loratadine. These forums are great for tips like that 👍😘
Thankyou, I thought I’d seen it somewhere. I wish I had a list of possible side effects from the various drugs so I haven’t got to go into panic mode all the time. I’ve already rang the chemo line 4 times, they’ll be fed up of me but as you say are brilliant.
The paracetamol & ibruprofen have kept the pain bearable for me today but I’m only having 1 injection 24 hours after chemo, hopefully it will be gone tomorrow as I’m taking my daughter to play golf, got to make the most of the sun.🌞 Hope you enjoyed your night out, it is lovely to feel like a normal person, even though I had to ask for changes in the menu because of not being able to eat certain foods 🙁 a well done fillet steak just isn’t the same 😂😘😘
I checked online re flowers Stargazer and it did say keep away:( was very surprised. Said they had germs ok normally but not if doing chemo 😞 never heard that before or that no raw foods allowed😳 Yet I know some who’ve smoked and drank through chemo and survived😂
Welcome to the group. I’m having 3 Fec & 3T too.
1st Fec was last Thursday. I was panicking so much before hand, it’s the fear of the unknown isn’t it?, but it all went smoothly.
Hope the sun is shining for you this weekend 🌞😘😘
I had the one single injection to boost white blood cells 24 hours after chemo. A district nurse came to do mine but they did say I could do it myself if I wanted to. It wasn’t painful and was injected into the tummy, she was able to pinch quite an inch 😂 It does seem to differ, I’m not sure why.
The pain has come for me exactly a week later in my back, hips/top of legs but ive found it bearable with paracetamol & ibruprofen.
Hi Ladies, please relax and breathe, I can really feel and understand your anxiety but this time before you start chemo is actually the hardest bit because we all fear the unknown. Many ladies continue to work throughout and you will need some normal to keep you sane. Yes you will need to take some precautions but life will continue. Having survived 4fec and 1T so far, I still fuss my dog but now use gloves when gardening. I still see friends but they all know to stay away or warn me if they have any bugs and I have stopped greeting people with a hug and stay away from supermarkets etc during the low immunity week but still eat out with friends in the good week.
Pineapple is helpful if you have a dry mouth in the first week as it contains an enzyme that makes your mouth water, but it is not essential.
The filgrastim injections are easy to do and don’t hurt if you take them out of the fridge 20-30 mins before you need them. Not everyone suffers with back or bone pain because of them - I never have - but some ladies find that the antihistamine loratadine helps if you do and is apparently prescribed in the US for this purpose.
Chemo isn’t fun but it is doable and temporary and we will get through this. Sending hugs and peace x
I didn’t find the injections to boost white blood cells painful at all. Mine was given 24 hours after chemo by a district nurse into the stomach, honestly I barely felt it. I only had one but I know some ladies on here have had more than and at different times, I’m not sure why there is a difference.
I had mine last Friday and woke up last night with pain in my back & hips/top of legs but it has been manageable with paracetamol & ibrupfen. It’s been a beautiful sunny day today here in Cardiff with the use of the painkillers I went for a walk with my youngest daughter which was lovely. Xxx
I really hope it’s ok to have them. I have them in abundance, my usual presents would normally be wine & Prosecco 🍷 🥂 😂
Let us know if you find out
Hi MBJ, that is so great!! I wish I had family with us, being just the two of us going through this is tough!
I will pray for you my friend, if you don't mind,
Ooh and send up a prayer for the February girls! I think you should go... use that STOP nasal spray from Boots helps protect from germs. I’m developing earache and headache oh no do hope it’s not a bug🤦♀️🤦♀️
Wellcome to our lovely supportive group. Yes cancer sucks and we are all going to kick it's backside. I am going to cold cap, having my hair cut short first, I am having FEC-T. Three cycles of each. I also have two cats one of which is sleeping on my lap as I type, and a dog. I also have a long suffering husband, poor thing I don't think he knows what's hit him. He has had to work out how to turn the oven on !! Good luck and keep posting.
What a lovely mummy you are. Can feel you feeling her pain as I would with my daughter. She’ll be ok with you there:))
Yes he is good Sandra and my sister is very supportive she is a nurse like me so practical and sensible. Although I don't feel sensible at the moment 😯. So I will feed my spiritual needs on Sunday and try to avoid the nasty germs 😷🤧👾👾.
I hear you, MBJ, but let us put it this way: soon you will be able to be back to a spontaneous life and you should do something wild!
Communion at home is the best, how lucky to have a brother vicar, he will be able to know exactly how to support you through this.
Thanks for this sounds horrific probably shouldn't have been taking it for the last 50 years yuk. I will just take the bread which is what I thought. But I will risk the germs, as I really need to go to Church before chemo on Wednesday. I will wear gloves so I won't shake hands skins to skin when sharing the Peace.
I have not been for weeks as I had a chest infection and feel it will help my peace of mind. My brother is a vicar so he will bring me home communion if I can't go in the next few months. Oh so much to think about and plan. Whatever happened to spontaneous life.
Regarding the the injections to boost immunity, how painful are they, and how often do you have to have them? wil it be the same to have just the one or several? Any side effects, besides the pain (I presume it will be back pain?)
Hi Sarah, I think I have spend more hours reading this forum than anything else in my life!
I have read that several ladies here spoke about pineapple as something they can eat to ease symptons, especially really cold or in popsicles so I will have them prepared, in case of need.
I will not be able to ease her pain or to feel any of the dreaded symptoms of chemo, this is the least I can do, try to prepare as much as possible to help her.
i have the single injection on day 2. When I previously had chemo back in 2011 I had injections over five days. It’s much easier having just the one. And yes the back pain kicks in within a week. I bought a heated back pad on amazon which has really helped and was prescribed Oramorph oral solution for if the pain got really bad. I had 3 cycles of FEC and 3 of T back in 2011 followed by a month of radiotherapy. good luck with it all.
Daisydi! That was it. Should have been easy to remember as my son's girlfriend is Daisy. But I think my "chemo brain fog" has set in already despite not actually having had any chemo yet:)
Sounds like you have really been through the mill already with 3 surgeries 😞 hope everything goes more smoothly for you going forward. I am also doing 3 cycles of FEC and 3 of T, followed by a month of radio.
Trixie, I really do love your attitude. I am also hoping to keep life as "normal" as I possibly can during the 18 weeks, albeit without taking silly risks.
I'm hoping to get back to work quite soon but it will be mainly WFH, especially in the most infectious week in the middle.
But I've been signed off for the first 4.5 weeks so I can go through 1 and a bit cycles first to see how I get on....
One more question..... the injections to boost your immunity.... I see some of you have to do these multiple times? I've been told once per cycle, exactly 24 hours after end of chemo infusion, soon day 2.
These things seem to vary so much regionally, or maybe it's just case to case....?
Is there anyone else who just does it once on day 2, or are you all days 3-7 with a nasty bad back at the end? 😞
Oh gosh Sandra - I thought I was super prepared and have bought a mega box full of stuff, but after reading your extensive list, I now feel like a total rookie:D
I think I missed the memo about pineapple, can someone enlighten me? (Luckily I really love pineapple!!)
I'm home from having my portacath fitted. It sticks out a lot more than I thought it would, but the kids think it's hilarious that mum now looks like an android 🙂 and I've never been one for low cut tops, so nobody will see it anyway.
I've spent the afternoon styling 2 wigs to look a bit more like how I would wear them. Thinking of thinning them both out a tad too as they are much fuller than my usual hair. But they are cool, I do like them.
My hair probably won't fall out now, just to spite me 🙂
Welcome aboard to our new lady whose name has jumped out of my head, and while I'm writing this I can't go back to check, sorry!
I'm on Fec-T as well, with the T I start herceptin but not thinking that far ahead.
My first wasn't too bad, fingers crossed for you hun but I suppose it still depends on dosages and other factors and general health xx
Hi Ive already had 3 surgeries, the first in October, second in November (where they forgot to do the anc) and then 3rd revision and anc on 10th Jan. They found an area of DCIS near my original tumour which caused all the problems as they couldnt see it. I was only expecting radiotherapy but had 4 nodes positive out of 24 removed so got the chemo call. I am going to cold cap and really hope not to be ill as I live alone with 2 cats and 2 rescue dogs. Dont have time for this cancer rubbish!