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Agarside
Member
since
02-10-2016
215
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Hugs
05-10-2018
09:46
As part of my regime I took a multi vit/ mineral drink for pregnancy as best value, garlic capsules for infection (always take anyway) but for my fluids would drink Marmite and Oxo cubes in hot water to boost immunity. Inever had probs with WCC it was always RBC.
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29-07-2018
07:14
To add, I had it. I was er+ with no lymph involvement, tumour G3. My score came back as 29. I had in my head, anything over 25 I would have the chemo. A
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29-07-2018
07:12
The oncotype test is not used for hormone therapy, it is used to give an idea if chemotherapy will be of benefit. It is for er+ tumours and based on a number of genetic markers which give an individual result. 0-19 chemotherapy would not be of benefit 31 and above, chemotherapy would be of benefit. Inbetween... grey area. Hth A
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05-06-2018
03:30
I tried the tamoxifen for 4 weeks and but the side effects were terrible, from bone aching, fatigue, depression, increased munchies (I was constantly hungry) hot flushes... and this horrible dry mouth which felt like cobwebs - I stopped taking it. I was a G3 tumor with no nodes but vascular. Oncologist then looked at AIs, but in mean time I studied Dim and found a homeopath who could could provide me the homeopathic version of tamoxifen (using my own tablets). So now I take this and 100mgs of Dim daily. Although I am not totally side effect free, it is livable and there is no sign of return of cancer and now coming up to my 2 year anniversay of diagnosis. My oncologist is now looking closer at Dim and IC3. There is lots to read and digest on this subject, but what ever you chose you have to be happy with the decision you make, for me there was no point in surviving cancer unless I could get out there and live after! Good luck to all - happy to share the evidences I found if anyone is interested. xx
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25-03-2018
09:52
This is very personal to me, but the fasting is to reduce symptons of nausea, the steroids are to help reduce nausea as well (and allergic reaction to chemo) so if you are not feeling sick, as with me - I chose not to take the steroids and deal with their side effects as well. A
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10-03-2018
09:16
Hi LotteT This is where you can find problems. As a cancer patient (I had found) that if you dont ask questions and kick up too much of a fuss, everyone is marvelous - but as soon as you say "what are the alternatives" you get looked on as a trouble maker - it is far harder for the oncology team to give one to one individual care. I had many discussions on what I was willing to "consent to" and not. I would agree the plan with the oncologist then the nurses would question it on the day - it was a pain in that it would take longer for them to double check what the Onc had written. In the end I was sick of it so changed hospitals and put in many complaints about the old one. The only evidence I could find on the benefits of steroids were that were given "routinely". Yes, they can help with sickness and they do provide cover for allergic reactions to the chemo. I didn't need any help with sickness, I had it covered, I also took two differnt antihistimines to help over come this, but I still had questions and confirmations at each cycle... All I can say is read, read and read some more... Consent is your friend, no one can do anything to you without your fully informed consent. Do what is right for you and your own personal circumstances. Good luck x
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10-03-2018
05:37
As I didn't take steroids with the FEC, I was not planning to take any fo the T part either. I 4personally felt that most of the symptoms were caused by the steroides. I compromised and agreed to 4 mgs prior to the chemo (none the day before) and the 10mgs after the chemo IV. The only reason I agreed was the anaphalaxis for the T is so much more of a concern than FEC. I also did cold extremities for toes and fingers which helped me to not lose my nails (similar to cold capping). I found the FEC acute and over with, whilst the T really took its time but the symptons got worse with each, but manageable... A
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20-01-2018
11:44
1 Hug
Hi Downdog Kat and all. Steroids are promoted as the "routine" add on to all treatment with no discussion of risks and benefits. When you consent to Chemotherapy, it is assumed that implied consent is given to the steroids as well. But when you go reading the research, the steroids do have side effects and you should be made aware of. Not just the lack of ability to sleep and the crazy dreams when you do, the crash when the steroids end. For example, we are told that cheotherapy caused "periods" to restart, actually the most likely cause is the dex - research with postmenapausal (women of 60+) woman beginning steroid treatment for arthritis etc are having the same problems. Added to this, Dex reacts with Ondanzatron - causing a side of effect of intense head heat, this then causes the core body temp to increase then treatment is then needed for potential sepsis. With FEC, the dex is used for anti emitic, so if fasting do we actually need it? Also used for anaphalaxis, so take extra antihistamines - do we need to take Dex, or in the quantities needed. With Tax the dex recommended is horrendous, do you actually need that much?? Sickness is much reduced anyway, but a reaction to the Tax, is deemed higher - so do you need as much as they say? I looked at all these and made personal decisions that I am happy to share for those who are interested. A x
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12-12-2017
07:09
1 Hug
Hi littlefairy Tomaxifen has lots of side effects and because of the risk of uterine cancer, you should always get any symptoms similar to periods checked out especially if any bleeding is involved. I know that oncologists tell us that the risk is low, depending on which research you read it is as low as 3% but as high as 19%.
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26-11-2017
12:51
Can I ask please.... Those of you now not taking Tamoxifen, did you have lymph involvement? My tumour was node negative but did have an area which was vascular - I can not get my Onc to tell me how this effects my risk status. I am seeing my oncologist this coming week to tell him I will not be taking hormone therapy. It has taken me nearly 6 weeks to get back to some sort of normality, my GP has me on prozac to help with my mood which very nearly saw me sink into depression (have had two previous times of medication for PND) so am at higher risk of depression. I am also going to ask him to "think outside of the box" and what tests I can do to help myself, happy to do this privately Ie blood tests, ultrasound scans etc. For er+ has anyone heard of "DIM"? I have lost 4 Kgs - think this is because I can now exercise easier and get walking more. Am having a fitbit type thing for xmas so I can monitor. I wonder if there is a thread somewhere for support for those not taking the hormone therapy. A x
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19-11-2017
08:00
Hi, Yes, I did the chemo, started December 2016. (I started this thread all those months ago!) I used lots of "alternatives" to help me with my journey - good luck with yours A xx
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19-11-2017
07:49
Hi All I am a G3 node negative (vascular) er+ 16mm tumour. I finished chemo in Jun, rads at end of July and started Tamoxifen 4th September. On 28th Sept I threw them in the bin. My left shoulder and hip joints just seized up. I put on 8kgs. I had the most awful "dusty mouth" that just felt like I was covered in cob webs, I had to drink cold fizzy diet coke to give myself some relief. But the worse was my mood and sex drive - just plumeted!! I had to stop taking to see if the SE's left and after 3 weeks, I was back to normalish, but had to have private physio to get my shoulder and hip working again. Still not lost weight and this is of great importance from someone who has struggled with weight for years. I need to be able to exercise!! I am now able to swim 3 times a week. Seeing oncologist in 2 weeks to thrash out what to do next as I wont take AI's without a bmd scan. It is worth noting that although Tamoxifen reduces reacurance of BC, it significantly increases your risk of uterine cancer!! So "Sophies choice" . A xx
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19-11-2017
07:27
Hi runawaygirl248 I to was er+ (8/8) 16mm grade 3 tumor 12 months ago (not Her+) and had my tumour sent off for oncotyping. I was also node negative but with a vascular element to it. I did lots of reading and looking at evidences, also others who have had to make the choice as the test is primarily to find those who chemo would not be of benefit to. Under 19 - chemo not of benefit 31 and over - chemo of benefit There is however the grey area - I mentally had 25 in my head, in that if it were over this I would ask for the chemo if not offered. Mine came back as 29. My Oncologist, however said "you would have chemo as the tumour was grade 3". Hope that is of help. I too was supposed to have Tamoxifen for minimum of 5 years, but after 3 weeks I had SEs that were not compatible with my life, to me there was no point in surviving cancer if I was overcome with awful SE's so have stopped taking it. I am due to see oncologist in a couple of weeks to thrash out alternatives, AI's are not an option unless I have a bone scan first. I am still looking at alternative threrapies. xx
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24-05-2017
10:28
Cookie, so pleased to hear your news!! Yay!! SALowery, great to hear you are back at work, although not ideally where you want to be, but hey, good for you getting out and for the fitness. I am really struggling this (LAST) cycle with fatigue... Considering I was bopping at the Take That gig!! (Just an add here, very disturbed about Manchester bombing, as this is where Take That performed, I was in that foyer, that is where I got all info to meet medics and get help, only 3 days before, it could so easily have been Take That and not Arianda Grande. Which makes it worse in that the younger audience was targeted.) I am also doing some midwifery work, as Self employed, have a baby due any day!! (Although I can not actually attend her, due to NMC crap about my inappropriate indemnity - a long story). I have another little part time employed job, which has paid me full sick pay for 6 months, but can not go back until after rads, which will probably be for best... Evie as long as you are not sedentary, and active and mobile, TED stockings are not needed as such... but such a relief to get them off! Also ginger is a bit of an anti coagulator (blood thinner) so can also help a bit if you need. Bra's, I have just ordered 3 from an US advert on Facebook - they are probably going to be crap but would like to try something. My lumpectomy scar is just where underwires dig in and even those without are rubbing - have tried stuffing folded kitchen roll there and that not helping either... But I also get shooting pains and an awful ache.. Cons says it is normal and can last months/years.... yay.... Hot flushes... I had started them before chemo, they then went off for a while but now also back with a vengence. When I had them before, "Sage" from health food shops (I bought mine online) was brill for this and worked well. As soon as this chemo cycle, has me back to normal I will be back on it!! It really took the edge off, although took about 4 days to really notice the difference. I am planning a walk this afternoon, yesterday I got fuel and had to wait 5 mins in the queue, I thought my legs were going to give way! Fatigue has been a real issue this time, although the other SE's were pretty **bleep** as well! Cardboard mouth atm and my lovely coffee tastes like drinking soil. No mouth ulcers (yet) but hands and feet hanging in there - but left hand where they cannulated for chemo a lot more swollen and nail beds are tender. The ones I cooled are good. I did suffer with water retention a lot last time, and put on 4 kgs (!!) but it disipated but am sure I can feel it coming on again.... Take care all! Amanda x
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22-05-2017
04:16
2 Hugs
I believe, we all have a journey to go through and if you wish to try something "alternative" then that is up to you. Fasting as a lot of research behind it and it will be good for some and not for others. Some of us want to more than come out the other side, if we want to eat normally, we will. If we want to eat junk food we will. If we want to fast, we should be able to, without being judged. Thanks x
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22-05-2017
03:56
Hi All, Here is a pic or our view! I really had a great time, but oh such a long day. I did contact the arean (Manchester) before going as I would be taking a large bag with meds in, and had to make contact with medics there, in case I didnt feel well. The nurse was an ex oncology nurse so was completely ok. I was able to use disabled entrance, but steps to seats was a bit of a climb. But managed it! I had to sit down a lot, as just sooo tired but the buzz of the music keeps you motivated! Was glad to be home after mind. All good, I was the driver so immensly pleased I did it! Day 3 - as normal, SE's kick in and I just feel sh*te - just keep saying to myself, this is the LAST time!! These were the worse, with sickness as well. Just lay on sofa or bed watching Greys Anatomy... just no energy, headaches, bone pain and this horrible mouth where nothing tastes as it should... arhgh.. So Day 5 now, and it should be "Big Mac" night... just not feeling up to going out, like last time, so will have to be a take away for me... I just need my energy back!! Am reading all posts and trying to keep up, hoping everyone doing ok, and feeling much better! Take care A x
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19-05-2017
09:21
Hi All ! Did I mention I am going to see Take That tonight in Manchester!! My sis and friends got me the ticket in the hope chemo would be ok and I could go. So looking forward to it, but have now had to contact the venue as the restrictions to what you can take in, if there is a medic on site and lastly accessibility - there are masses of steps, queueing and more steps!! I am plagued with fatigue and just walking around the hospital yesterday was hard work! Yesterday was ok, found the last cycle very painful, stinging! Nurse said all was sited ok, but hell it did not make it enjoyable! A heated pad seemed to help, I wished everyone well and to not be offended if I never see the place again!! They were very understanding and said they hoped they wouldn't see me!! Lol! I am so full of fluid, puffed up and uncomfortable - put on 4kgs in last 2 weeks - unbelievable! Hubby keeps reassuring that it will all reduce once this awful T is out of my system, roll on tomorrow when the SE's kick in. Have a lovely weekend all Amanda xx
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18-05-2017
01:27
Cookiepus I love tbis idea! And so grateful to this group for keeping me sane and knowing I am not alone! I think I am pretty much on all social media and use regularly! Half way tbough now and bloody uncomfortable! No one can understand why...??? Hubby and I sneaking to KFC after...shhhh dont tell kids lol!! Amanda X
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