Upcoming treatment

Hi Coffeequick

Welcome to the forum. I was told the same thing about my hair by my oncologist, I think my head hair thinned slightly but not so anyone else would notice, downstairs fell out but didn't care about that. I didn't work during treatment wasn't practical with hospital being a 2 hour round trip with appointment time on top of that in the opposite direction. In terms of how I felt I could have done at the beginning although I had my chemo via a picc line and pump which was attached 24/7 for 5 days at a time, the pump and tubes were annoying and a pain with clothing. Your chemo sounds the same as mine, so if you are having a picc line, buy something called a limbo sleeve for showering they are brilliant i managed to get my pump and tubes into mine. Sending hugs. Xx

Hi Coffeequick ,

Firstly welcome to the MacMillan Online Community although I’m really sorry to hear of your recent diagnosis. 

My chemotherapy regime was slightly different to yours as in I had a mitomycin infusion day 1 of treatment then oral capecitabine each day of radiotherapy thereafter. I had slight thinning of my hair, only I noticed though nobody else did, the condition of my hair did suffer though, probably a combination of both treatments but a couple of good cuts & some intensive conditioner after my treatment was finished & it was much better. 

We have a few members here that have had your particular chemo regime so hopefully someone will be along soon to offer some advice & reassurance. 

You sound as though you’ve a positive outlook which will stand you in good stead & it’s great news that your oncologist is confident that you’re curable, this treatment is short & sharp but very effective. 

Regarding work, I think it depends on what kind of work you’re in as to how long you’ll be able to continue working, I’m in retail & suffered from fatigue from quite early on in my treatment & couldn’t have worked even though I felt pretty well throughout. Managing daily appointment's & factoring in delays at the hospital which can sometimes occur can also cause issues with work, it will also depend how far away you are from your treating hospital, what is possibly only a 45 minute appointment (I had to arrive half an hour before my appointment to drink a set amount of water to fill my bladder)  can end up eating into a large portion of your day. 

Please pop back whenever you’ve any questions that you think we may be able to help with or if you just need a chat about things in general, we’re always here to support you however we can. 

Nicola 

Hello Coffeequick,

Im sorry that you have this diagnosis and are having to start treatment. I remember the anxiety wondering what would happen and wish I had known about this forum then. You will find lots of answers and support here.

In answer to your question I think you are very unlikely to lose your hair. Your treatment is slightly different to mine in that I had Capecitadine, not Flourscil so others may be able to answer more accurately.

I had some thinning but not too bad.

As for working, the treatment side effects increase as the weeks go by and individual responses vary. You might find the first few weeks ok but week 4 is harder. Having to get to treatment every day also takes up a lot of time.  I understand your need for distraction completely but I would plan to have time off at least in the second half.

Welcome to the forum x

Hi Coffeequick,

I'm not able to answer any of your questions, as I am scheduled to start treatment February 24. That being said, I will be   receiving the same chemo as you (5-FU instead of capecitabine), so I will gladly share my experience as the weeks progress. My oncology team also told me hair thinning was likely but losing all of my hair was not.

Probably most unexpected for me was that I was told I could not shower during the 96 hours of 5-FU infusion (it is given here by take-home pump), so I am bracing myself to feel utterly greasy and unclean! They assured me sponge baths are okay, so I guess I will muddle through with that.

I'm so sorry you received the diagnosis, but I am glad you found this forum. The people here are amazing and have been a real comfort as well as an excellent source of firsthand experience with treatment and recovery. Good luck with your treatment and please keep posting. Xx

Hi Poppydays,

Again, it’s interesting how treatment varies . I guess it’s not a one size fits all depending on the size and location of the tumour and also where in the world you are receiving treatment.

I’m genuinely sorry to hear that you can’t shower while having the infusion and really feel for you. I’m fortunate not to have had to endure that additional layer of challenge and consider myself grateful. 

Wishing you the very best for the start of your treatment. X

Hello Coffeequick

Another welcome to the forum but I am really sorry you are finding yourself having to be part of it (we all were).  You can ask anything and everything on here (no holds barred!) and you will get answers from experience - almost everyone on here has had or is going through the treatment.

As for working - I am retired so I wasn't affected but in common with others this is quite a tough treatment and can cause fatigue whilst the body is trying to repair itself.  Even if I had been much younger I don't think I could have worked, particularly at the latter end of treatment.  If it is at all possible, it would be a good idea to keep all your options open and additionally prepare for times when you don't feel like cooking, or nothing takes your fancy.  Fast microwave meals are your friend, along with strong flavoured foods which seem to work.

And; you might be in some considerable pain in your nether regions towards the end of treatment.  You will get through it (we all did) but it is possible that these side effects will really affect your usual daily routine.  We have lots of coping strategies but a lot of these involve just total resting (wearing really big girl pants) and lots of self TLC.

And we are all here to virtual hand-hold during this time.

Big hug

Irene xxx