We chat about the various side effects we get, but I am curious about how many of us actually get what. I am tempted to set up an online survey that we could fill out and say what we have had.
Would anyone be interested? If so, what questions would you ask?
These would be mine:
a) what age are you?
b) how many children and what age were you when you had them?
c) where do you live (county)?
During chemo:
d) what chemo regime are you on?
Did you put on weight?
Did you lose weight?
Were you sick? If so, when?
Did you get offered neulasta (or any alternative)?
What anti-sickness tablets were you given?
Did you suffer constipation? If so, when?
What resolved it?
Did you get mouth ulcers?
What resolved it?
During hormonal treatment:
e) what hormonal treatment are you on?
Did you get hot flushes? If so, when?
Did they ever stop?!
Did your periods stop?
During radiotherapy:
… I haven’t had this yet, so would need some ideas of what it is helpful to know…
I may be just being my over-controlling, statistics-mad self, but would be curious if other people wanted to see a survey that could be added to by all those going through the process…
I’ll try and find software that would give us all fairly instant results too.
Gelclair from the unit and pretty much everything available off the shelf at Boots
e) Tamoxifen
10) No - touchwood
11) N/A
12) Horrendous! and had to have gynae op not happy! but all resolved now
13) RT - didn’t have
sorry just realised you don’t want the results here!!! you could try survey monkey but I’m not sure it’s free. You could just use this thread an collate the results yourself?
It’s not controlling - good on you for the effort.
Ha ha @eal!!
It is useful if only to see if the questions make any sense!!
I’ve had a look at Survey Monkey and we can get so far on the free account, so I may start there and consider upgrading. The main restrictions would be the number of answers/respondents and being able to share the results easily.
I’m all for it… just out of curiosity? we have so many questions flying round our heads when diagnosed, then we all want to know where it went wrong and I know it must be especially annoying to all the ladies who have done everything right and still got it. I was surprised to find the amount of 30 something ladies who were breastfeeding or had breastfed…always makes me wonder here the original statistitions got their figures? good luck with this I think it would be very interesting.
Yes quite happy to do this and would be interested in answers, considering I live in France it would be interesting to see the difference between UK and here. Please keep us posted if you manage to set this up.
Hi
I like this idea
would like to ask;
how long since diagnosis
did you have side affects from neulasta/alternative
thought your questions were great, Flora
I haven’t started radiotherapy either, so can’t help there
hope it works out
monica x
Great idea and happy to provide details - maybe the question of what was the worst in this treatment you experienced could be added to each - Ooh and veins - did you have any problems with veins.
Great idea…
It’dd be really interesting to try and pull some information together.
As it happened the week i was diagnosed there was an article in the newspaper about what ‘type’ of women get BC…it said unhealthy diet, over weight and haven’t breastfed. I eat healthily, have never been over weight and breastfed all 3 of my babies…make me wonder where some of these ideas come from!! guess I was just unlucky!
Im tempted to do the same where I live in spain I live in a very small english community and to me there is too much cancer! in a small hotel where i worked for only 2 years out of nine staff 5 of us have or had or even died of cancer! thats just the hotel, in my research ive been doing is our water has a very high concentration of chlorine, you can sometimes smell it in your tea its awful, and when you research cholrine its highly toxic and many speacialists believe ther is a strong connection to cancer! Just a theory i think worth looking into!
i think at the moment a lot of the questions are probably based on your experience of chemo / the common side effects for that type… on taxotare / docetaxol it is really common to have severe joint pain, problems with nails falling off, breathlessness etc…
This would be fascinating. The difficulty I foresee is in analysing the results - would be great if BCC could take that on but it would be an enormous amount of work.
There are so many issues that would probably need to be included. For example, on chemo did you have: problems with veins or blood clots; headaches; dizziness; rashes or other skin problems; neutropenic sepsis (if yes were you on GCSF or similar) etc. Would love the survey to pick up on more unusual side effects too.
Also with things like tamoxifen some of us have previously had hysterectomies with ovaries left in tact so although we ovulate we don’t have periods etc.
One suggestion could be to tackle the survey in parts so you could start with surgery, then chemo, then rads, then hormone treatments.
I’m sure there would be a lot of support for this.
yes, Im up for that too - would be fascinating and maybe comforting to others that are coming after us!
veins, low blood count, fluid retention, headaches, mouth ulcers - can think of loads of other questions that might/might not be relevant!
God you have some energy girl - couldnt even begin to get my head round doing something like that at the moment!
Karen xx
At the end of the day, if I do get this together it isn’t going to be a conclusive, scientific survey - more of getting a feel for how common are the side effects that we get, another way of sharing the things we share in our responses to threads but with some stats.
Sadly, I don’t have the energy or inclincation to do a proper survey and even a student doing a PhD probably wouldn’t tackle quite so wide a topic as this!!
It would be more about the reactions to the treatments than the original cancer and its status, so yes, would do it in sections so that you can skip the bits that aren’t relevant.
I’ll see what I can get done this week, but keep the comments/ideas/thoughts coming…
i think it would be interesting even if it wasnt an official poll as there are too many variables really and as you said its not scientific but you could just use thread or create another one asking what peoples experiences were of the questions documented.
some people for example like me have had more than 1 diagnosis with more than 1 type of BC, with different treatments.
it might even be useful to add what surgical interventions people had and whether they had this before or after chemo/rads etc as some people have worse SEs from the surgery than the other treatments.
also it would be good for people who are further past diagnosis could comment too as some SEs become apparent further down the line or dont disappear as quickly as the professionals tell you.
Hi - Besides most of the ones mentioned in first post here are other side effects I have been affected by. May be too many to include my Onc said I have had the full set lol - I could never imagine what has happened in last few months!!! -
Having chemo dose reduced or changed regime due to excessive side effects on both FEC and TAX
Hot/cold sweats flushed face/neck during chemo treatment fec and tax
Sleeplessness
Numb or tingly toes hands - TAX - peripheral neuropathy???
Swollen feet ankles - TAX
peeling skin on feet - TAX
very dry palms of hands - tax
Hair loss - cold cap questions - always the first thing on new dx minds! (and last after other se’s start).
First becoming alergic to penicilin (other drugs?)- on first FEC - symptoms itching hands/arms
Collasping/fainting as side effect of taking too many different side effect medications in one go!
Severe mental problems/panicky/sobbing/irritability coming down from steroid high - dexamethasone especially with high dose with TAX.
Memory and brain fog - chemo brain
Cracks at sides of mouth
Throat/ear infections???
Dry scabby nasal passages
Eye problems - dry/itching and vision problems
Libido? dare i ask?
Worsening of bladder/sensitivity problems
Pains in breast scar areas
Renewed soreness af ancillary area
Not mine but noted from threads or friends:
Picc line inserted/infections/nurse handling/dressings etc??
Having to stop treatment early and why.