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Holeinone
Member
since
28-11-2018
134
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Hugs
24-04-2023
09:59
Hi Magster Sorry to hear you've had a bad experience but it concurs with my own at my last mammogram. A pair of nasty women who refused to heighten the machine after the last patient, she was about six inches shorter than me. Not even a chat or a nice word on entering the room, then when I made a few ouch noises under my breath, said "we don't deliberately try and hurt you" whilst physically stretching my post op breast to fit in the machine, hey after 2 surgeries and radiotherapy it's all still pretty sore there, oddly enough! One of them even pushed my stomach hard to get it out of the way of the plates, I have bloating and digestive issues following the treatment, despite being slim, she could have asked me to breathe in but no. It was a thoroughly vile experience and I was angry and upset by it, I couldn't believe the way they treated me or that they thought it was OK to treat someone like that.
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24-04-2023
09:39
2 Hugs
This thread has been an interesting read, I have minor urinary incontinence but have not had Letrozole. I also have other issues which were dismissed by the oncologists I saw but were acknowledged by the chemo nurses I came into contact with. So far my research on Dr Google has lead me to autonomic neuropathy, disruption to automatic body functions which can be caused by chemotherapy. In my case the biggest red flag was my always slightly raised blood pressure showing as normal after chemo, this was not picked up on, and the change in this function lead me to research the possible cause. Other autonomic issues can be: hot flushes due to inability to control temperature function, dismissed as menopause in my case, when I told the doctors I was having trouble controlling my temperature. Dizziness and fainting, if your blood pressure was normal before chemo, this may be more likely to happen to you. Difficulty digesting food, bloating, slow stomach emptying, feeling full after a couple of bites of food, nausea, vomiting. Sweating too much or too little, goes hand in hand with lack of temperature regulation. Exercise intolerance, where your heart rate does not increase when you exercise. Sexual issues, dryness, usually passed off as part of the menopause. Urinary problems, loss of bladder control, lack of full bladder awareness, inability to completely empty the bladder etc My dentist has told me I have mucositis from the chemo, she isn't cancer trained but knows enough to acknowledge the problem! There are other symptoms which can be researched online, it's actually annoying as some symptoms are definitely known about and touched upon whilst receiving treatment, but are then skimmed over and ignored. I was made to feel like a neurotic mad woman, so much so that my last two or three oncology appointments I barely spoke to the oncologist (I saw a different doctor at almost every appointment and found them all to be robotic).
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29-08-2022
08:34
3 Hugs
Hi LadyParticular Sorry to hear of your hair issues, I can empathise. I have had hair regrowth issues since finishing my treatment in February 2020, FEC-T and Herceptin. Now left with thin hair and noticeably stubby eyelashes and sparse brows. After almost 2.5 years of waiting patiently for improvements and nothing growing, I treated myself in June to some products from UKLash, the brow serum and lash serum. I was completely sceptical but have stuck to a routine with the brow serum, applying every night. Not so with the lash serum as it is cold and makes my eyes feel funny so have only applied every other night at most. No-one could have been more shocked then me when I went to remove my brow powder one evening (after about 5 weeks of continuous use of the serum) and realised I had brows and they wouldn't rub off! And even though I have been hit and miss with the lash serum, I do have a lash in every follicle and they can be seen with or without mascara. I'm aware they do a hair serum so will hope to try this soon, the brows growing back have made such a difference. Take care x
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24-02-2022
08:48
1 Hug
Hi Laines, sorry to hear you are having hair regrowth issues. I too had Herceptin and it seems to have almost halted my hair regrowth. I finished Herceptin in February 2020 and didn't throw the wig away until that July, 18 months to grow something resembling a short bob. My hair took ages to even start to grow after chemo, and as much as I saw other ladies rocking the thick pixie cut style, mine was thin and awful. My hair is now thinner and weaker than it was before. I had strong almost wiry straight hair, now it is dry and wispy and feels hardly there. I've lost a good 40% of my hair for good it seems, and it's very upsetting. I used to have fast hair growth, I had to trim my fringe about once a fortnight. Now that is every couple of months, what's left of it. I still have hair from the top of my head that has not yet reached my shoulders, I've literally grown about 8 inches of hair in three years. Before my treatment started my husband joked that I probably wouldn't even lose my hair as it was so strong and fast growing, it all fell out within days after the second round of chemo, no itching or warning, just all went. I also have extremely dry skin now and lots of stomach issues with digestion that just never went away after chemo, so I think I am just very unlucky. But I do think Herceptin switched something in my body and all my fast cells are now on a go-slow. I know this probably isn't what you wanted to hear but hope that knowing what my hair growth has been like, you know you are not alone. Take care x
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24-11-2021
11:13
Thank you for your reply Bernard. I found references to it being linked to chemotherapy on the Mayo clinic site amongst others, and with the symptoms being so easily attributed to other things, I feel it would be helpful if there was more information about this so we are all aware.
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24-11-2021
10:50
Hi Sue Same here, staying off sugar (and carbs) is the key I think, I was very tolerant of it previously but now it really sends my body out of balance. Like you say though, sometimes something sweet is the only answer! I now try to snack only at weekends, even biscuits, and make sure my meals are small but packed with good ingredients, so less carbs. It's difficult to get the balance right. I feel full really quickly these days. I am now aware that there are several types of neuropathy, and to me (as a lay person) it seems possible that chemo could cause any of them, not just peripheral. Autonomic affects automatic function, like the action of digestion and bowels, bladder, sweating, eyesight, all sorts. I used to have high blood pressure and now it is normal, that was the main flag for me that chemo had done something else to my body. It wasn't picked up because it was normal, even though I warned everyone who came near me with a cuff that mine was on the high side. I just feel this needs more research so that ladies who, say, have night sweats and think it's menopause, when it might be something else, something that might be treated differently.
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24-11-2021
10:36
1 Hug
Thank you Shi, I have just ordered a small bottle to try. I've actually just switched to a pink salt shampoo by Sea Magik which I bought on offer a couple of years ago. It has noticeably thickened my hair and made it glossy and shiny in two uses. It is expensive at £11 a tube but was half price I think. I used the first tube when my hair was very delicate so I didn't really notice a thing. It really does look better now after two washes, the sea salt is a stimulant, as well as other ingredients. Just need to thicken it right up. fingers crossed the castor oil does just that. Rambomac, no I was not told about permanent hair loss, I found out about that on this forum, and also found there are ladies with much more noticeable hair loss than me, mine looks normal apart from when the wind blows! To be honest I would still have had full chemo, I think it needed to go through my whole body, and every cell, to work and flush out everything. The many side effects of chemo still need to be understood though and remedies found for the damage it causes. I stumbled across autonomic neuropathy after my oncologists (saw different ones each time) attributed every single side effect to the menopause. All of my symptoms appeared in front of me when I found out what it causes. I feel that a lot of ladies could be suffering from this but putting it down to the menopause, which is what we are told. Take care ladies and thank you for your replies xx
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22-11-2021
03:38
Hi I think I posted further down on this post about gaining a stone when I have always been slim. I have lost all but a pound or two of the gained weight now, three years after starting treatment. However, my fitness levels are dreadful, but my food tastes have changed. I have bloating and slow digestion still (I found out about something called autonomic neuropathy which causes this), and due to that my body shape is different - I'm much thicker around the middle, so really can't tolerate stodgy foods too much. Sometimes I struggle to finish a cake, that was unheard of a few years ago! I have had to switch from bread to wraps for sandwich type lunches, and tend to steer away from too much grease as it turns my stomach. It's a hard slog trying to get fit again after chemo!
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22-11-2021
03:21
2 Hugs
Hi Rambomac Thank you for posting this, I always look for posts about poor hair growth as mine is and continues to be. I shall be following your thread with interest, and will try the Jamaican castor oil myself. I finished chemo in February 2019 and Herceptin February 2020, and had to keep my wig on until mid 2020, 18 months. I kept seeing ladies with gorgeous short cropped hairdos, all full and thick, mine was scraggly and patchy. Outwardly my hair covers my head, however I always had a fringe, now that is very sparse, every time I look in a mirror I see the light bouncing off my scalp. I have to wear a hat as my head gets so cold in Winter now. I hate having my photo taken as if the wind blows you can see my hairline has receded quite dramatically and I look partially bald. I guess I have lost about 35 to 40% of hair. In little under three years I've only grown 8 inches or hair, I am trying to cut off the frizzy ends but they have not yet reached my shoulders from the top of my head, and am having to have a short bob now as my hair is too thin to take a longer haircut. Added to the extremely slow and thin hair growth I also have no eyebrows so have to draw them on every day, never had an issue before chemo, they were very obvious! I hope the castor oil works for you, I am at my wits end with my hair, it's soul destroying. Take care x
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17-10-2021
03:13
1 Hug
Asking if anyone knows about autonomic neuropathy. This can be caused by chemotherapy and affects temperature control, bowels, bladder, digestion, eyesight, blood pressure, skin function and even sexual function. Autonomic neuropathy is when the nerves that control automatic bodily functions are damaged. I have had a lot of issues following chemotherapy that I was told were down to menopause, or were too random for me to think they could be linked to my treatment or were just ignored (I was unfortunate in not seeing the same oncologist each time) Over 2 years down the line and still suffering, I finally found out about autonomic neuropathy, and was shocked to find all my issues on the list. Oddly, I did have some peripheral neuropathy but it was late onset and manageable. Autonomic neuropathy affects your eye reactions to dark and light, making your pupil reactions slower. It also lowers your blood pressure. This can result in dizziness or fainting when getting up too quickly. I have always had high blood pressure and mentioned this to my herceptin nurses, they always said, no your blood pressure is just fine, and it was. I was puzzled but thought nothing of it. Bowels and bladder are affected, your body may no longer recognise when either needs emptying or just not emptying correctly, causing incontinence and incorrect emptying of bladder, urgent bowel movements and issues with needing to empty bowels during the night. Also causes constipation. Temperature control issues leading to overheating and sweating when encountering a change in external temperature, also, rather oddly, when consuming food. Very disruptive at night as once getting into a warm bed you gradually begin overheating until you are uncomfortable and sweating. I also have very hot hands and feet, which is probably left over from peripheral neuropathy and does not help with the temperature issue. Digestive issues with slow digestion and constant bloating, feeling full when you have only had a small amount of food or being hungry straight after eating. Dry skin. Hands and feet (and scalp) in particular with me are so dry I find it hard to hold small objects. Great if I want to turn to crime as my fingerprints are virtually non existant. There are probably more symptoms but I can find out very little about this. I would be interested to hear from anyone else who has these issues or has even had it mentioned by an oncologist or doctor.
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19-09-2021
01:11
Hi there Bras are a minefield after surgery aren't they! I bought some of those pull on stretch bras (sleep bras) off ebay, think they were 3 for less than a tenner and the colours were very bright, and lived in them after surgery and whilst having my chemo etc. They are fine whilst you are recovering and also for sleeping in if you are uncomfortable on your side as they help to keep boobs in place a bit. I have now discovered pull on padded bras and am a convert, it helps being only a B cup. I can recommend the Jockey ones, I have both the cotton V neck ones and the modern micro seamfree bralette. The fabric is firm enough to offer good support for everyday and without the dreaded underwire, without cutting off your circulation! I think they give a nice outline as well, which is important when you've had breast surgery.
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15-10-2020
03:49
1 Hug
Hi chemobaby Thought I would tell you what happened with my weight during chemo and Herceptin, as we sound similar. I finished chemo in February 2019 and Herceptin February 2020. I've always been on the lower side of BMI but during chemo managed to put on a stone, it was a shock as I've always struggled to put on weight, I'm small framed and quite active. Oh how easy it was with the chemo munchies! It took about 6 weeks to lose half a stone after chemo finished, the extra half a stone hung around a lot longer as I have bloating and digestion damage from treatment. After finishing Herceptin 8 months ago I am finally down to my treatment start weight again. I'm a different shape due to bloating still, but it feels better to be able to get into old clothes again. I didn't diet, just ate sensibly and didn't snack. Because of my new digestive issues, I often have the munchies now so have to ignore that feeling to eat, it's new to me not to feed my face when I feel hungry but I have to remember it's not hunger! Good luck with your weight loss xx
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15-10-2020
03:35
1 Hug
I was on amitryptiline for a couple of months late last year, as my feet and hand nerve endings were very lively during the evening and at night. Worked for a while (10mg) and I was supposed to up the dose but started to feel not so great the morning after. Spacey and half asleep. They also didn't continue to help me sleep. A friend's hubby was on them for nerve pain but couldn't take them for the same reason. One thing that has helped me is the colder weather and rather than exposing my burning feet and hands to the cold (which does feel good!) I've been wrapping up, using an electric blanket too so I'm getting into a warm bed etc. I've actually had almost a full night's sleep some nights, what a treat. I've also just started wearing my gloves out and about too. Hope you find something to dull the pain, it's very depressing.
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15-10-2020
03:22
Hi Ladies I had my surgery in September 2018 and still have discomfort. I constantly feel like I have a drawing pin stuck in my boob where the cancer was. Constant little pains and sore breastbone and ribs, back too. If I don't use my affected side arm it starts to feel like cording is coming back. I have to sleep on my tummy so use a pillow to soften the blow, so to speak! Hugging is uncomfortable and mammograms are actually painful. Not sure why it's all so sensitive, it drives me crackers. I had an (abdominal) hysterectomy 10 years ago and was moving furniture after six weeks, recovering from that was a walk in the park compared to this and all the issues from treatment I've been left with.
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15-10-2020
03:07
1 Hug
So, still have the same issue as before, anyone else struggling with dry hair and skin months after treatment has ended? Hair is so fragile and frizzy and thin on the top of my head, I've grown just 5 inches of hair on top of my head since chemo finished in February 2019, not enough to have a fringe! I'm not enjoying the sunlight bouncing off my scalp either. Oncologists parting shot after signing me off was moisturise. Not exactly helpful as I could happily do this every hour and things wouldn't improve. My body's ability to produce oil (sebum?) has been switched off. Is this something that will get better?
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21-05-2020
01:52
1 Hug
Ladies, I need good news stories, is there an end to the dry hair and skin? It's been 15 months since my last chemo and almost 4 months since my last Herceptin, before treatment you could fry chips in my hair and on my face, it was so greasy. Now I no longer wash it, the front is frizzy and dry and I'm still wearing my wig as it just won't grow. I do have dry scalp issues as well, immediately after chemo finished I started experiencing almost psoriasis levels of flakey scalp. I appreciate I'm doing it no favours by still wearing the wig out shopping, I can see the front hair is breaking off where the wig cap sits. My skin is also dry, my finger ends are like dried out leather, constantly wrinkled like I've been in the bath too long! Is there light at the end of the tunnel, or do I have to learn how to deal with Sahara levels of dryness? Stay safe everyone x
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01-02-2020
03:50
Hi Landygirl I had 6 cycles of FEC-T. Three treatments of FEC followed by three treatments of T. Mine were three weeks apart, which I understand is the norm, so if your first treatment was say Monday the first of the month your next treatment would be Monday 22nd and so on. Literally every three weeks for six cycles, so yes the cycles are 21 days. Hope that helps.
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01-02-2020
03:41
Thanks Helen, In my head that's where I'm at. I think I would prefer the annual thorough MOT rather than preventative surgery.
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30-01-2020
03:42
I have been offered genetic testing due to family history (just breast cancer, nothing gynecological). I think this is something I want to have done but wanted to know if you test positive are you pushed towards preventative surgery? I'm still receiving treatment but my surgery was a lumpectomy, not really happy thinking about having to have further surgery. Anyone out there happy with just annual testing if they are deemed higher risk?
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30-01-2020
03:32
Also signed, thank you for sharing this. I would have thought this is the whole point of Breast Cancer Now, to have drugs available like this so that secondary breast cancer ends up not life limiting but something that can be treated on an ongoing basis, like diabetes.
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