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Starting chemo October 14

Linzz
Member

Re: Starting chemo October 14

Thanks very much for all the info Peta. Some studies find the enzyme does matter and others that it doesn't. My unit avoids prescribing sertraline for flushes if you are on tam, suggesting that whatever the studies suggest my unit is working on the premise that the enzyme does/might matter. I guess its another "jury is out" situation.

 

I sometimes think the more you know, the more you worry, but then I wouldn't want to not know either!  As we are going to look at risk/benefit of changing to an AI at my appt in July I will ask my Prof which side of the research fence he sits on.

bettypoppit
Member

Re: Starting chemo October 14

That's a good article PETA and has given me food for thought... which is dangerous 😉

 

Yes, OH and Betty completed the 8.2ml circuit in just over 2 hours - and B had a game of ball too - and we are all relaxing now. OH heading out for his first 26+ml walk of this year next weekend, so a useful leg stretch. It's my ma & pa's van and it is very comfy and quite cosy (we've had the heating on since we got here yesterday...I'm such a big girls blouse 😉). Watching rugby waiting for a miracle! lolol

Peta
Member

Re: Starting chemo October 14

Thanks Bettypoppit

Are they back from their walk yet? And how's the caravan? The weather is quite mild so it sounds really nice, I'm a complete wuss in cold weather!

Peta
Member

Re: Starting chemo October 14

bettypoppit
Member

Re: Starting chemo October 14

Hi PETA, thanks for indulging my total noseiness! lol

I get it and just maybe the lower but longer zapping period will work in your favour and you will have minimal soreness and fatigue 😀 I do hope so and then you can relax and enjoy some 'time out' from all the travelling. xx

Peta
Member

Re: Starting chemo October 14

Oh and Bettypoppit you asked why 5 weeks in rads? , it's in 6 of 17 nodes, which isn't great. They wanted to do an extensive area on me (like some of the other ladies here) but I've had a very rare autoimmune disease called sarcoidosis. I had it in my lungs. Because a bit of your lungs get zapped, and I had sarcoidosis they wanted to give me a lower dose, otherwise it might screw up my lungs again. I had it when I was 30-35 and was. Wry poorly then and it's not something I want to get back. Anyway, they think more time and lower dose rads will be better for me longer term. Xxx
Peta
Member

Re: Starting chemo October 14

We can't post links so I've sent one to Bettypoppit, Linzz and Jingo, but if anyone else would like it please let me know.

Here's a summary of this enzyme situation as far as I know it from reading papers online. Bear in mind I'm not a doctor and you should never believe anything you read on message boards (!) so please don't take it as gospel and talk to your doctors instead.

It appears that Tamoxifen is activated by an enzyme and a very small proportion of people don't have that enzyme, or have some but a smaller amount than average. The same enzyme also metabolises about a quarter of all prescription drugs (plus a number of illegal ones like ecstasy).

Some papers have suggested that for a percentage of people Tamoxifen might not work, or work quite as well if they don't have the enzyme. Other papers seem to think that it's not such a problem, as Tamoxifen can be broken down on other ways they suggest.

In addition, Taking Tamoxifen with some prescription drugs that use the same enzyme might reduce the amount that Tamoxifen works. If you took the other drug occasionally it probably wouldn't make any difference, but if you took it every day the Tamoxifen might not work as well as it might. Obviously your doctor can advise you, but it's a good idea to tell your doctor if you are taking any old drugs from your cupboard, any over the counter drugs and any herbal supplements, because they can make Tamoxifen less effective. I've seen Tramadol mentioned as one not to take regularly and I've got a whole heap in my cupboard, so I'm going to ask my doctor and pharmacist about whether I can take them or should chuck them out. I'm definitely going to run a list of my drugs past my doctor to make sure they are okay with Tamoxifen.

Some studies suggest that getting hot flushes on Tamoxifen is a good thing, that suggests that you are metabolising the Tamoxifen, and it's working, so you're not one of the 15%. I don't think if you don't get hot flushes it means that it's not working either, so don't jump to conclusions, Tamoxifen I'd broken down by more than one enzyme apparently. Doctors disagree on the relevance of the flushes - so no firm conclusions either way.

I'm also going to have a serious chat with my doctor (and ask my pharmacist research doctor brother in the states) about taking aspirin. Google Aspirin and breast cancer. I wouldn't take it without taking the advise of a doctor, but I think it's likely I'm going to take some regularly if I get the go ahead. It seems to have two possible benefits. Reducing likelihood of cancer returning and boosting the effect of Tamoxifen. Unfortunately the studies into aspirin haven't completed yet, but talking to your doctor or Oncologist about it can do no harm. Take advise though. Aspirin can have really nasty side effects on some people, so really don't just take it because you read it online. There's all sorts of crackpot advice out there, the tricky bit is sifting out the good information from the crazy.
Linzz
Member

Re: Starting chemo October 14

I had read about what I called "the 15% thing" but not looked into it much.  A bit more research today tells me I was off with the %. Basically, that an enzyme that the body uses to metabolise tamoxifen is poorly metabolised by something like 5-10% of caucasian populations, and then metabolised a bit better but not perfectly by another something%. This means that if (genetically) you are in those groups you won't metabolise the tam so well and so it won't be as effective. I believe there is a relatively simple blood test but whether it is proven enough to be available on the NHS I don't know. I know some research docs who do pharmacogenetics and will probably pick their brains once I am back at work. And then I'll demand that test from my onc in due course! I guess it's just another thing to bug us when we are in worry-mode but something that is outwith our control really. I didn't mean to worry anyone, I just wondered if anyone had already read up or knew anything on the topic.

 

Bettypoppit - glad to hear you've got away for a wee break. Never mind about the walks, there'll be plenty of time to catch up on those soon enough Robot Happy

Debtex
Member

Re: Starting chemo October 14

I'm at christies in Manchester . Parking normally bad but horrendous now half the car park is gone . I will appeal but not much hope .
Good job I didn't come out and find the jobs worth putting it on my windscreen I think 😉
bettypoppit
Member

Re: Starting chemo October 14

Debtex, really hope the meds help with your painful feet. Parking seems to be an issue at most hospitals, but that is very jobsworth of someone to ticket you....you must be sooo pi***d off with that...can you appeal against the fine? I blooming well hope so. I also wondered if you are at UHNS (that was) as they keep shutting off the cancer unit car park there, due to building works?

bettypoppit
Member

Re: Starting chemo October 14

Morning Posse 😀. I'm also very seriously considering the option of not going back to the tedious and costly monthly routine of having my hair coloured and living with the grey...if....it comes through all over grey and that's a big 'if'! I usually just have badger stripes at my temples (OH's endearing description! :/)

 

PETA, linzz, Jingo...you seem ahead of the game in terms of research findings. I'm on Tamoxifen, so would be interested in the '15%' issue.  I've had a 'hate', 'hate' relationship with my oestrogen forever...had a miserable time of it until I was introduced to "Merina". When I was diagnosed oestrogen positive, I was not in the least bit surprised and it gave me another reason to hate my oestrogens lolol. No scientific reasoning going on you understand, but it has been useful to hang my hate and anger on though 😁

 

Sat on my lonesome in the caravan, waiting for OH and Betty to get back from their walk around Carsington Water....feeling left out, but so far enjoying the break away. (Resisted the lure of camping and caravanning for 50 years, even though both sisters and parents have been into it, but now really enjoy it and no idea why!). 

 

Lovely to hear from you Murphy and I hope you aren't overdoing it. It's still early days, as the general wisdom seems to be 6+ months for recovery. LainieG, I hope you are still feeling OK today and not overdoing it either.

 

PETA, because I'm very nosey (and of course please don't feel obliged to answer and tell me to butt out) but I was wondering why you were having to slog in and out for 5 weeks of rads, as 3 weeks seems the usual?  I hope you are also resting up if and when you need to. 

 

Hoping all the Posse are OK this weekend xx

 

P.s. Junash, Zelda, Riversidedawn, enzobenzo and I'm sure others whose names I regret escape me...how are you all doing? 

Debtex
Member

Re: Starting chemo October 14

Haha didn't mean I was going to bingo , meant bingo I got caught !!!! X
Debtex
Member

Re: Starting chemo October 14

Wow wish I was at the hair colouring stage , I guess I could spray paint my scalp ! Rads nightmare continued . I got a parking ticket this time . There is notoriously difficulty parking at my hospital and they have closed off half of the radio / chemo patients car park for building contractors . I parked just touching yellow lines otherwise would have missed my slot and bingo !
The drugs I have been given for the p n are anti epilepsy drugs but in a mild dose . It will take a few days to see if they work . Normal pain killers do not deal with the pain . At night it's just like having needles shoved into my toes ! Fingers xd it works . Other than that I am getting fitter and stronger and my normal body weight is returning . Well done to all of you going back to work xxx
Linzz
Member

Re: Starting chemo October 14

Lovewine - thanks for posting about hair dye. Great name by the way Smiley Happy Interested to see the one you've used is paraben and ammonia free.  I have been thinking about taking the plunge and staying gray. I'm "only" 45 but as it is now all gray this is perhaps the opportuntity to be done with the major pain of continually doing my roots. Part of my reasoning is also to avoid the chemicals associated with hair dye - although no studies have indicated causation of any type, I am firmly in the "no chemicals, no food additives" stage of getting my head round moving on. I may well colour my hair using non-permanent products sometimes though (e.g. just before I go back to work next month so as not to scare my colleagues too much). I fear I will look like Servalan though. And yes, I know that most of the Posse ARE old enough to remember who that was!!!

 

Peta, thank you for mentioning the coffee/tam study. I had not come across it previously. I don't much like coffee and had cut out caffeine altogether as this is a trigger for hot flushes. After a quick google I can't see any correlation between caffeine and risk of recurrence, so this is probably a safe way to try to affect outcome. Please remind me of this when I am pulling faces from the taste and sweating away afterwards LOL. Have you come across anything about the 15% of people who don't metabolise tam properly? This is something I keep meaning to look into and will be asking about next time I see an onc. My onc is talking about moving me onto an AI in a few months and he plans to look at the risk if I stay on tam as opposed to an AI. Tam seems to be suiting me, so I plan to ask for a blood test to see if I am part of the 15% or not. Not sure if this will be available. To be honest I'd pay for it if need be.

 

At one point I was spending a lot of time on the internet researching various things. But lately I have been doing a lot of work from home, and letting the worries of work and elderly, unwell parents take over from my obsession with all thing bc related. Hearing about this study has reminded me not to take my eye off the ball too much. 

Lovewine
Member

Re: Starting chemo October 14

Hi there, am popping over from april 2014 thread, regarding hair dye, i found my hair started to grow before chemo had finished, i used the Naturtint colours from holland and barrett, they are very gentle but also effective! I did colour mine fairly quickly after chemo too. I also use Olia colours as they are also gentle on new hair! The reason for leaving colouring too harshly is because the new hair is susceptible to damage easily, i am colouring mine again today, have had no problems and felt much better with my hair coloured! Good luck and all the best to you returning to work😄.
LainieG
Member

Re: Starting chemo October 14

Murphy I googled integrative therapy and found a clinic attached to Gartnaval hospital where the Beatson is based. Any doctor or specialist nurse can refer you. It looks really interesting. I'm looking forward to getting back to work but it's quite a stressful job and very physical so I'll definitely have to ease in carefully. I'm getting more confident about going out without scarves etc. I've been out shopping, to the doctors and out walking with the dog. I've had a few looks but I'm trying to ignore them. I bought a semi permanent colour today and was going to do it myself tomorrow but I'm only 4 wks post chemo (my hair started growing before I finished for some reason). Do you think 4 weeks is too soon? Has anyone else had advice on this or know why we have to wait to colour it? Xxx
Bettypoppit I hope your joints and your skin start to feel better. Try to enjoy your time away anyway xxx
Hugs to everyone and hope time flies for those still having rads 😙😙😙
Murphy1963
Member

Re: Starting chemo October 14

Hiya posse, things seem to be moving along for everyone. PETA, the travelling back and forth takes every day is just the pits, then trying to get parked is a nightmare if it's anything like my hospital xx

Lainie, so glad you got home yesterday. Yes feel free to come visit me too if you've got the cleaning bug!!! Housework is a huge chore to me atm, I can't get into housey stuff at all. I'm so knackered when I get home from work, I'm just doing the bare minimum at home. I've gone up to 4 days in my phased return this week. I'm going to stick to 4 days until the middle of May. I only work from 9 - 2.30 but as I say it takes a lot out of me. Are you looking forward to going back? Take it easy but enjoy xx

Debtex, you are having a time of it and sorry to hear about your experience starting rads. I can't be bothered with bolshy, loud folk so I can appreciate how you felt. Hopefully that'll be the first and last encounter xx

Jingo, you are really lucky to have this facility in your area. We don't have much at all where I live. I cannot recommend acupuncture enough, it got me through my chemo with regards my vomiting phobia, but it was very expensive as I was having it twice a week throughout. However there is definitely a place for complimentary therapies , good for you seeking this out xx

Today I was at a course run by BCC called Moving Forward. It's on for the next 4 weeks. There was about 14 of us there, all various ages and stages of treatment and beyond. Today we had a surgeon in talking in general about bc and treatments and why treatments are different for individuals etc. it was very informative and answered a few questions I had always wondered about. We then had a fitness instructor in and had a wee session with him doing light exercises and a talk about the importance of exercise. It was a really nice day, lots of laughs, and was nice to meet all the other ladies and hear other folks stories. I'm looking forward to next week when the BCN will be there to discuss side effects. I am so much struggling with painful joints, so want to find out if there's anything I could be doing to help with this.

Lainie I think you are right starting work without wearing a hat/scarf - I so wish I had done it. I've got a really good covering now, I'm no way bald just very short hair. Tomorrow I'm going to my hairdresser and she's going to put a semi perm colour on. If it looks ok I MAY go without a scarf next week, we'll see if I chicken out. I'm 16 weeks post chemo now so another 8 weeks and I can get a proper permanent colour on my hair (not that I'm counting). Eye brow/lashes - my brows have come back in darker than they use to be and lashes are a lot longer than they were before. Long may they stay like that, I'll not be tinting them like I use to and risk upsetting them.

I've got an appointment on tues at the oral Maxillofacial clinic to look at the sore in my mouth. It's not an ulcer, it looks like a skin tag of some kind. We'll see what they say. The following week I have an appointment with the oncologist. I need to start writing down questions, I have many. I have an appointment in a couple of weeks with the BCN, and I'm waiting for my results appointment from the genetics clinic (should be April).

Sorry for the long post, I'm babbling now. My OH is snoring away on the settee next to me, nothing on TV, think I'll get off to bed with my kindle. Have a lovely weekend. Enjoy the caravan bettypoppit, you deserve some time away.

Hugs everyone xxx
jingo_x
Member

Re: Starting chemo October 14

ah disappointing about the placebo group Peta - but yes I would want to choose which group I am in so probably not a good candidate either.  My husband takes low dose aspirin every day and I am going to put it to my onc when I next see her - sadly the research I have read suggested that low dose doesnt have much effect, but I wouldn't mind trying!

 

Bettypoppit - this role is very new at my hospital and I had to ask to be referred having discovered that this person had joined the hospital.  The remit is to incorporate effective, proven and cost-efficient complementary therapies for patients and staff at the hospital so not just associated with oncology.  Your onc may be able to refer you on to someone locally even if its not at the same hospital. I only found out there was one in my area by googling - BCN didnt know about it.

bettypoppit
Member

Re: Starting chemo October 14

Jingo, that sounds very interesting. I don't believe that there is anything like this offered in my area, which is a shame. I hope you get some useful insights and tools and I would be interested to hear more about it xx

Peta
Member

Re: Starting chemo October 14

Hi Jingo

I'd seen the Add Aspirin trial too, but I believe they're looking at evaluating two different doses, plus a placebo. I'd rather just take a low dose aspirin under my doctors supervision than be on the trial and be given a placebo for five years. That's a bit selfish of me I know, but if aspirin helps I'd rather take it.

Has anyone else seen or heard of any good 'preventative' trials or papers about things we should avoid or take? Jingo or Linzz perhaps, you seem to be looking in these areas too.

Jingo I'm seeing a specialist lymph nurse after radiotherapy ends. She said they prefer to let the radio settle and then treat, so I'm all lined up to go in early April.

jingo_x
Member

Re: Starting chemo October 14

Bettypoppit glad you are healing at last but sorry your trip is being dampened by it. I have also stopped exercising since rads as I was too sore. Managed a cross trainer session today with no bra - only works in the privacy of your own home of course 🙂
The integrative medicine is really about complementary therapies and mind- body tools that can help with that woolly term 'wellness'. Sometimes there is concrete evidence that stuff works eg acupuncture or pain and nausea, other stuff is less mainstream and less evidence based though. She is helping the hospital build on the complementary side of things. I am not looking for a miracle cure for cancer but want to strengthen my immunity so that I avoid other illnesses and I would like to find peace of mind and happiness once I am cut free from the medics. I want to enjoy whatever time I have left without constantly looking over my shoulder or cancer. I am hoping that the therapies and mind-body techniques are going to help!
Now what I would like is a miracle cure for lymphodema!
bettypoppit
Member

Re: Starting chemo October 14

p.s. LainieG, I'm going to be striding out without my beany very, very soon. I'm no longer bald, but just want a little more before I start frightening the neighbours.lol

p.p.s. I've also noticed that the hot sweaty flushes seem to be linked to eating and drinking....like having a faulty thermostat. Really horrible 😱😱😱
bettypoppit
Member

Re: Starting chemo October 14

Hi Posse, great to hear that you are home LainieG - FAB-U-LOUS 😀. As you seem to be fit and in the mood for cleaning, any chance you could nip round to mine....it's a bit of a tip still! lolol.  Peta, getting your rads done sounds a complete drag with such a long journey. It seems a chunk of time to go still, BUT, you will be finished pretty soon...grit those teeth, head down and keep at it. We're waiting for you on the podium 🐧🐧🐧😀.

 

Jingo, is your integrative therapy, like investigating a fully holistic approach to life ...all aspects of the physical and spiritual being? I'm intrigued. PETA, you have mentioned so many things too, that just haven't come into my orbit. I'm wondering what I need to be considering.. I've not been enlightened during the treatment as to why I got bc so I don't know what - if anything - to do differently now. I just don't get it. Muddled and distracted by it.

 

With regards post rads fatigue, i was pretty wiped out for 12 days, very stiff achy legs and getting up from sofa and up staires was quite

an effort, but i do feel like that it is now improving. Certainly my legs and general mobility is more normal. However, had to bother the gp on Thursday as my 'burned' skin was really bothering me.  On antibiotics plus codeine & paracetamol now but thankfully much more comfortable. I can see that my skin is beginning to heal. Phew! In the meantime, as i'm so sore and currently bra-less (which is hideously uncomfortable at anytime) I cannot even walk Betty again - I seem to have gone backwards 😞  We've come away in the caravan today - 1st trip since last summer and OH is going to have to do the walks on his own....such a disappointment. However, I seriously need to 'suck it up' as the kids say and stop feeling so sorry for myself! lolol

 

Here's hoping that we can all find something nice to enjoy over the weekend. It's been a very long haul, but we ARE getting 'there' 😀😀

 

jingo_x
Member

Re: Starting chemo October 14

Glad to hear you're out LainieG and getting ship shape before going back to work.  Sorry to hear about your feet Debtex, mine are still numb but no pain - it must be very debilitating to be in so much pain.

 

Keep it up Peta, tick off the days and you will soon get through it.  My own tiredness improved in a matter of days after rads finished. but my skin has been incredibly sore this week which only started after a few days break.  Now using aloe, aqueous and calendual cream but have a bit of a rash going on too which is very itchy!

 

Had two evenings out this week and discovered a disappointing side effect - when I drink a glass of wine I have a very long hot flush, followed by profuse sweating.  Very embarassing - I hope that one fades with time!

 

I had my meeting with the Integrative Medicine doctor - we talked about the supplements I am taking and the changes in diet which she generally approved of - I did ask if any of them might interfere with Tamoxifen and she said it isnt possible to tell because there are no concrete studies, but I take everything with breakfast so thinking maybe I need to split them up a bit.  I did ask about sleeping in the dark with Tamoxifen as I read a report about melatonin (and our bedroom is never full dark), but we got side tracked with something else and I didn't get an answer. Hadn't heard about coffee!  

I am not very spiritual or mind-body so I asked a lot about what I could be doing and she talked about the 'limbic cycle' and brain networks and she explained to me why feeling gratitude, compassion, empathy, acceptance etc are all important in controlling the busy mind and stress/cortisol production.  Plus of course mindfulness.  I will be meeting her again so hope to learn more and have more questions answered.  I also asked if I could join the Add Aspirin trial as I am interested in the effects of aspirin on cancers. 

 

Had my first session of manual lymphatic drainage this week for the lymphodema - that seems to have helped with swelling but is very expensive.  Going to try the Bowen technique next week too.  How is your arm Peta?  Did anyone look at it for you?  I hate my sleeve but I am glad I got one when I did.

 

Bettypoppit - how is your skin today?  settling down I hope

 

love to all the Posse xx

LainieG
Member

Re: Starting chemo October 14

Yes Peta. I got out yesterday. So glad to be home tho I'm running around doing housework. The boys try but they don't clean to my standards 😕 My sons girlfriend helped me by giving the living room a thorough clean. I like her lol😊😊. Saw my GP today and I'm going back to work next week just for one day I think to see how I get on. After that is the Easter holiday so I'll have a couple of weeks to make sure I'm fit.
I've been going out without a hat or a wig on. I was really scared at first but I'm getting used to it. I do have some hair so I'm not bald and I've bought a colour for it. It's not a permanent dye so it should be ok? I'm just sick of this grey and I want to go back to work without having to wear a wig or a scarf all day xxxx
Peta
Member

Re: Starting chemo October 14

Lainie did you get out of hospital yesterday? I hope so! 💐🌸🌷

Sorry to hear that your feet are still paining you Debtex. 😰. Do you find that painkillers help you at all?

How is your sore boob doing Bettypoppit? Is it easing at all with the cream, it sounded so very painful? I hope it's at least starting to get better. Let us know how you're getting on I've been worried about you. X

How are the rest of you finding the post rad era, is the tiredness easing for any of you now?

I've just done my 13th rad which means I still have 12 to go.

I'm getting really fed up with the one hour plus drive each way because this is just taking up the whole day and my husband is trying to do some work, at least a bit each day. We have to leave at 9.45am for a 11.30am appointment and don't get back until 1.30pm at the very earliest, if we are lucky and the traffic is clear. Grrr, still only 3 more interrupted weeks to go. This is dragging now though!

So, after that quick moan the thing I came on to say is have any of you see the medical papers and old news reports about the benefits of drinking coffee and taking Tamoxifen? According to reports it halves the likelihood of a return. It's a good job I like coffee I'm definely going to ensure that I drink 2-3 cups a day now, I'm also going to discuss it with my oncologist too, just to check with him. The reports and medical papers sound pretty good though.

Has anyone else read up on things to avoid on Tamoxifen? There are quite a few foods, vitamins and drugs listed, so I'm going to grill my Onc on the topic to see what his views are. Have any of you been given tips? I haven't started taking them yet - any side effects to report?

Jingo how did you get on with your whole body therapist consultant person? Anything interesting from that area? I can't remember what their proper title was!
LainieG
Member

Re: Starting chemo October 14

Oh Debtex hope today is better for you. What a horrible time you're having. Sending big hugs 💖💖💖
bettypoppit
Member

Re: Starting chemo October 14

OMG how horrible debtex, i sooooooooo HATE loud obnoxious overly familiar people....take your OH abd let him wither them with his disdain 😉 hope it gies/has gone better for you today and that ypu get some relief for your sore feet really soon. I would guess that will be getting you down, hugs xx
Debtex
Member

Re: Starting chemo October 14

I know linzz . Gd job my husband wasn't with me , he hates that kind of thing and has difficulty hiding his distaste ! Let's hope the crowd today are introverted and quiet !
Linzz
Member

Re: Starting chemo October 14

Oh Debtex what a ruddy nightmare! The loud overly detailed yakking was a problem in my unit too, drove me nuts. I hope today goes better for you x
Debtex
Member

Re: Starting chemo October 14

Horrid time first rads visit . No where to park , feet really really painful so hobbled in . Went to waiting room which was full of very loud chatty people who all seemed familiar with each other I.e regulars . They talked loudly and at length about their or their other halfs conditions . One particularly irritating man in a shiny business mans suit said ' lass what works for me had cancer of cervix ......... And she's doing fantastic now .... It's all about keeping positive ' aaaaaaargh . I sat there with my bobby hat on and my eyes shut clutching my head praying no one said ' what are you in for love ? ' then a clanging bell rung , they all stopped yakking , clapped and went back to yakking . Apparently people ring the bell when they have had their last treatment . But I didn't know ! Then went to an exercise class for radio to breast which was good but hard with sore feet . Got home cried , went to dr to try to get more meds for feet which I managed , then cried most of night due to pain . Feel bit better now but may have to resort to the dreaded sock and croc shoe combo today .
geeG
Member

Re: Starting chemo October 14

Hi Bettypoppit - I'm hoping for you that the guideline of rads side effects get worse for 10-12 days after last treatment is true so your tissues should start making real progress… x

Fatigue Friends … I am now 6 days after last rads … and I thought I was tired yesterday … but today has been much more so … short dog walk in the park had me breathless and very glad to get home … had been ironing 6 or 7 shirts in a row, no bother … 2 was enough today … so a"2 shirt day" … LoL… (tho I shall try to do some more when OH is cooking supper… ) …

LainieG … take a deep breath and congratulate yourself … you are nearly there … I think you said you will be starting tablets and getting home tomorrow… just one more hospital breakfast to go!

… with all best wishes and hugs to Everyone … x x x
nicnac15
Member

Re: Starting chemo October 14

Hi everyone Sorry to hear so many of you have fatigue its frustrating when you want to do things and your body wont let you.
Ive lost track whose having what done at the minute, i went to hospital today for my 3rd rad and when i got there they had cancelled it the machine had broke ! Luckily i was seeing my onc consultant to get answers from the xtra rads there giving me and basically its due to me being under 40 and the last 5 will be concentrated on the operation site.
Got my tamoxifen prescription at last so i will be starting them tomorrow hoping my body accepts them.
I noticed alot of your consultants are saying the same as mine 6 months recovery on our bodies, i too have the tingly fingers and aches in legs but wierdly getting used to it.
Got the go ahead to go on holiday today so im excited to start looking and hopefully booking. Xxx
bettypoppit
Member

Re: Starting chemo October 14

LainieG that sounds great, but please do be careful not to over do it....take it easy xx
LainieG
Member

Re: Starting chemo October 14

Madam I'm going to do a phased return so that I'm not jumping back in too quickly and I'll only be there a week then it's the Easter holidays so that gives me another 2 weeks to rest. I'm hoping it'll be ok. I think i just need to get back to a normal routine and do normal things. I'm sure I'll get a lot of help at work too. Just keeping fingers crossed that it'll work out ok xxx
Madam
Member

Re: Starting chemo October 14

Laine G, not yet out of hospital and already thinking if going back to work. Hope you are well enough! Can you take a bit more time to get stronger? Take good care . X
bettypoppit
Member

Re: Starting chemo October 14

Hi Madam, big hugs. The smallest task can take the biggest effort and still prove elusive...I'm giving myself a pat on the back if I manage to cook supper - even when it's nothing more than oven fish & chips!  You are still only a few weeks finished from the dreadful poisoning and I'm sure it will still be messing with your mind and mood. Crying has been a feature of this process for us all at times but we are getting through this. Hold on in there. xxx

LainieG
Member

Re: Starting chemo October 14

Thanks ladies. I'm ok. Just desperate to get home. Really fed up today. I feel fine physically (well as fine as I can expect after chemo) but I have to stay in hospital. It's very frustrating! 😬😬 Home on Thursday hopefully then I'm staying away from hospitals in case they drag me in again lol. Xxxxx
So sorry to read about some of you struggling with fatigue. I hope things get better soon. I'm just sitting around all day and I feel tired but I don't know whether that is just boredom. I did find at home that I was tiring easily after quite simple tasks and walking upstairs leaves me really breathless. I'm hoping to go back to work next week. Hope I'm not expecting too much of myself😕😕
Well hugs to everyone and I really hope we're all on the road to recovery from all the horrible treatments and ops soon 😙😙😙
Madam
Member

Re: Starting chemo October 14

Thank you AM! Wow, and am meant to go back to work well and truly win tin that timeframe!
Physical one thing but I cannot cope with the simple stuff sometimes, get very teary and overwhelmed! Cried this evening as proudly prepared a slow cooking recipe, went to kids spring concert, came back, all hungry and expectant...and hubby told me I had put it on the ' keep it warm' dial and it wasn't cooked! Sobbed yesterday as a girl in my dusghter's class asked Tara if I was her grandmother!! Boo hoo
AMDriver
Member

Re: Starting chemo October 14

Hi Madam

 

My onc said 6-9 months after the end of the last chemo cycle to feel "normal" - whatever that is! But of course in that you possibly have an operation and definitely rads which take it out of you some more.

 

I feel ok mentally and think I can do stuff but when I try and do them I am exhausted!

 

Hope everyone feels better soon

xx

 

bettypoppit
Member

Re: Starting chemo October 14

Hi Madam, I think the fatigue thing can only be answered by 'how long is a piece of string'! My onc says that some take 6-12 months to recover fully :(.  With regard the sore and tingling extremities, I am finding the pyridoxine seems to have given a 50%+ relief in the 10 days that I have been taking it and i think others have reported the same, so it might be worth trying. With regards sunshine, I know that post radiotherapy you need to factor 30+ and cover up, but not sure otherwise. I hope you are getting over your cold xx.

Madam
Member

Re: Starting chemo October 14

How long will we feel this fatigue for? I know I am only a few weeks since chemo but I seem to feel worse? Tingling red fingers also worse. I still have surgery to go on April 21 and probably rads to go! Will there still be a line for me to waddle on to at the end of this? Also wise ladies, has anyone been in the sun? We are going back to Doha for two weeks end of next week, do I have to borrow a burka to hide from the sun??!! Thoughts to those with more serious issues then my tingling and tiredness! Sorry xx
bettypoppit
Member

Re: Starting chemo October 14

Hi geeG, day 12 since last rads...still red raw under my breast - the pain has just had me weeping in the shower .....I am a total woosie mind. Just over 24hrs with the flamazine cream so still hoping that it will work. If not, I'm going to have to trudge back to the drs and actually hang around to see one of them...not a thought I relish. xx 

 

LainieG, hope you are still OK and not gone round the twist and up the walls yet!  xx

 

I've had a minor surge of energy and activity this afternoon. Hoping that I won't be paying for it tomorrow and that maybe, this represents

a little **bleep** of light at the end of fatigue tunnel 😃. I do hope so, I've got so many ordinary things I want to get on with and I sooooo need to get on with some proper walking too. 

 

I'm sorry, but I've mostly lost track of where posse members are on the roundabout of treatments....so hoping all are doing OK and not being too battered. PETA, after tomorrows zap you are over halfway through 😃

geeG
Member

Re: Starting chemo October 14

Hi Peta - have you told the staff about the throat problems? If you are having any difficulty with swallowing please please tell the staff as soon as possible - please don't try to ignore it.

LainieG - so glad you are still smiling thru all this - one step at a time can feel so slow…

Bettypoppit - hope the new cream is helping the Comfort Factor. .. How many days have you now reached post-rads? … this really is a more demanding sequence of treatments than we can realise before we start …

… and the low energy, tiredness/fatigue is so difficult to accept, let alone explain to anyone else…

Hugs to Everyone… x x x
AMDriver
Member

Re: Starting chemo October 14

Hi LainieG, I hope you are feeling ok and crawling up the walls as I know I would be!

 

Nicnac, I know precisely what you mean about end dates, my original thought was that I would be finished by end of March but then I was told mid-April and today I got my rad dates through and I will (hopefully) finish at the end of April!  I feel like I can't plan anything....

 

Peta, you were spot on with the eyebrows - on inspection this morning I found a lot of very fine eyebrow hairs had surfaced, still a long way to go and no eyelashes either but still a step in the right direction.

 

I hope everyone else is feeling well and starting to get more energy back

xxx

nicnac15
Member

Re: Starting chemo October 14

Thankyou LainieG and peta yes more frustrating with the end date in mind and then they move it but weve all come so far and got through alot of some more than others.i will keep thinkin about that beach i will be seating on when i get the go ahead to book xxx
LainieG
Member

Re: Starting chemo October 14

Windows not walls lol 😄😄
LainieG
Member

Re: Starting chemo October 14

On the subject of hair mine is growing fast and is looking wavy. I have hardly any eyebrow hairs but can feel some new ones with my fingers but can't quite see them yet. I didn't lose all of my eyelashes but had very few left and I think they might be growing back tho I have more on my right eye than my left. If that keeps up its going to look very odd!😕
Had a pedicure in the wellbeing centre upstairs in the hospital today. The Beatson cancer charity run it and you can have all sorts of treatments. Might book a manicure now since I'm stuck here til Thursday. It's all very nice with relaxing music and floor to ceiling walls so you can see for miles across Glasgow. Wish I'd been here for my other hospital stays. Even the food is better! 😊😊
Peta
Member

Re: Starting chemo October 14

Thanks for the info on rads Linzz, I feel like I've swallowed a golf ball at the mo! You post was very reassuring, so thanks, I hope mine just goes away too.

Sorry to hear about your rads NicNac, I met a nice lady at my rads who was also having boosters, I'm not sure why but it obviously happens sometimes. It must be so frustrating to find out now though when you'd made plans. 😁. I haven't got my Tamoxifen prescription yet either. I asked about it and was told that some consultants prefer patients to start them after they have finished rads, so mine is obviously one of those.
LainieG
Member

Re: Starting chemo October 14

Oh ladies. I'm reading about all the problems you're having with rads. I'm thinking of you all and hoping you're feeling better soon. Nicnac I can relate to how you feel about the extra rads. The delays in my chemo we're really frustrating. You have a date in your mind and when they take that away from you it's awful. I felt like I was in one of those dreams where you're running towards a door and it's moving away from you. Still feeling a bit like that. Thought I'd be back at work this week and this latest hospital stay has put paid to that. So I know how you feel and I'm thinking of you. Hope it won't be too bad and you'll adjust to it. There's no other choice us there? Xxx