Diagnosis & chat with oncologist ... finally!

Hu Em44 I am glad things are moving forward for you and you can at least make plans. Interesting about your oncologist regarding the oxygen therapy. I am assuming you mean the HBO chambers. We have a multiple sclerosis centre who use this and also the public can book to use them for therapy. I enquired about this at the centre and you have about six people at a time in this chamber. I am profoundly deaf and also struggle with flying and air pressure and my hearing department advised me against it. My oncologist also said to me don’t waste your money as it was to do with actual anal cancer and research shows it isn’t effective. It seems each oncologist have different views and it’s a bit frustrating. Will be very interesting if your oncologist is able to give you information about its effectiveness in anal cancer. Hope you have a good chat with your son and get a sense of relief that you can be open about it now. Julie

At long last, I am sure you are relieved to have finally met the doctor who is going to be in charge of your care, and am pleased you have someone that you find easy to talk to.  It is a relief when you have a rapport with the person in charge of your treatment.  I really liked my medical oncologist who I was under for the first six months of my treatment (I had six months of carboplatin/paclitaxel prior to chemo radiation) and took lots of supplements which the young pharmacist told me to stop.  I asked my oncologist if I really had to and what she said made a lot of sense, it is recognised that some supplements really do help with cell renewal and that is not what they want whilst trying to kill off cancer cells.  She said that a definitive study hadn't been done because it would be unethical to have some participants run the risk of their cancer increasing so her explanation was good enough for me.

I had capecitabine tablets alongside the radiotherapy, not intravenous chemo, I know some hospitals differ slightly.  The tablets were huge and I was terrified I would throw up whilst taking them, but somehow, mind over matter I think, I managed them all and am now back to retching at the tiniest tablet!  On the chemo department I was in initially there were lots of people with a picc line and they didn't find it a problem at all.

I hope the discussion with your son goes well, and please remember we are always here should you need support or have questions.

Irene xx

Thanks Julie - yes I find the whole medical world frustrating at times, can always come across differences of opinion and research that'll contradict another's research so it's can be tricky at times.  Yes it's the HBO and I'm currently trying to fit in as many sessions as I can before it all begins at a local MS centre. So he didn't want me to have it at the same time as the treatment but that's as it's shown to heal things, which yes I suppose I hadn't thought of that in itself shows he considers it works. 

I keep thinking unless there was two of me & one went down one route, one the other and compared the outcomes I'm never truly going to know the difference to if something helps or not.  That's the problem with the trials & research they have, there's lots of variables that can influence outcomes.  I forgot to mention I was also offered to join the PLATO ACT5 (i think that's what it's called) trial with increased radiation given - so need to look into & make mind up on that!

In the end, after balancing all I read on many different matters (not just cancer), I try to listen to my gut instinct / intuition and go from there.  We have intuition (an inner tuition /  inner-guidance) for a reason and feel certain senses such as that are overlooked in the world we live in today. Many cultures lost connection with the natural environment & some natural senses we used are now dormant...I'm sure eons ago our intuition would have been a important part of our survival. The gut is often spoken of a a second brain and how much it is linked & communicates with the brain, so literally what we eat impacts our mood and chemicals that are released.  Sorry just realised I'm waffling even more than usual this evening ha ha, must be as I've got the results out the way. I'll update if I think the HBO helps at all for what it my be worth to others X

Thanks Irene. Yes I was surprised he didn't tell me to stop some supplements down to that.  I may ask again / the nurses and perhaps I'll ask which ones are not recommended, so I can avoid them.  As like the oxygen therapy, I really don't want to go through all of the chemo & radiation to find something I did counter-acted it.  

I'll be on mytomycin & 5fu for 5 days and then 5fu in last 5 days. Funny I've been so focused on the radiation that haven't looked into all the chemo properly yet! I assumed when people said you have it at beginning and at last week it'd just be one day to administer, silly me! I'll get onto researching this more tomorrow.

Thanks so much for your supportive message - deep breath before speaking with son, but he knows something is going on so the air will cleared tomorrow and he'll have all weekend to digest it / ask any questions...re-assured knowing I have this group to help should I need it Xx

Hi Em44 ,

I’m pleased that you have more information now & things are moving forward for you. I too was on several supplements prior to treatment & took them all with me to run by my oncologist at the appointment where my treatment plan was discussed. I was advised to stop taking the ascorbic acid & the live goats milk kefir but I could continue with things like the clean multivitamin & vitamin D supplements. I don’t confess to knowing much about HBO therapy but it makes sense what your oncologist says about it being counter productive during treatment if it promotes cell renewal & healing which is obviously something you want to avoid while the treatment is trying to destroy your cancer. 

I also had to have the conversation with my youngest daughter, 16 at the time, but had this as soon as I had my diagnosis as she was taking her GCSE’s & knew I’d been in hospital for investigations etc. I don’t envy you having this conversation but you will feel better once everything is out in the open. 

Nicola 

Em glad you feel better now you have a full diagnosis and treatment plan. I remember feeling exactly like you  whilst I was waiting, it was the worst few weeks of my life because you don’t know what you are dealing with or how serious your cancer is. Once I had my treatment plan I was able to focus on the next stage. In terms of taking vitamins, prior to starting treatment I took loads and was advised to stop taking them until after treatment ends, the reason being they can prevent the chemo and radiotherapy working effectively. Things like vitamin C, A, turmeric are an absolute no no until 6 weeks after treatment ends I was advised along with probiotic drinks. 
I’m just over a week post radiotherapy ending and have a taster session booked tomorrow for the hyperbaric oxygen therapy so I’ll report back on how I find it. If it’s not too claustrophobic I’ll be booking a course of sessions to help with recovery. Apparently cancer cells don’t like the increased amount of oxygen and  become easier to kill. I’m going to give it a go anyway because if it helps with recovery whilst helping to kill cancer cells it’s worth a shot. 

Wow, no one told me to NOT take anything, and they all had lists of the vitamins and supplements I take, including Vitamin C! I never did get a straight answer on whether or not to keep using estrogen cream, but that was out of the question for most of treatment and recovery anyway. And I was just too miserable to keep up with my vitamins then, all I could manage was Ensure. 

Oh, for universal health care.

Suz

It’s hard to know what’s correct to be honest but I was told by the consultant that vitamins such as A, C E for example are antioxidants which can interfere with the effectiveness of radiotherapy and chemo. So on hearing that I thought best to stop taking them all until 6 weeks after treatment ends. However on reading some of the comments on the forums it appears advice is conflicting so who knows. I will be starting them again when I can because I’m hoping it helps build up my immune system. 

Thanks so much Nicola - always very helpful advice and provide much needed support! Really good to know about certain supplements, I will look into this more, as like many things there's some mixed messages out there.  Yes I was really hoping to do the HBO as felt I was treating my body and cells to something nice during all the toxicity but I did understand what he was referring to & I know I can use it post treatment to boost my system so appears i'll have to be patient!  It'll give me an added thing to focus on counting down through treatment.  

Really appreciate sharing about your daughter.  My son has just turned 11 so he's at that awkward age of knowing about cancer but not fully understanding. Not as important as GCSE's but he has 'sats' coming up that I've got more worked up about than he has ha ha, so much put on them these days... I'm likely to be at worst stage of treatment by then so it was concerning me I may not be able to 'be there' properly to support him but I don't think it's probably worth worrying about in the grand scheme of things! I'll be having conversation soon so he has the weekend with me to digest it, ask Q's and share lots of hugs & kisses  Xx

Thanks Doggymum, yes I've felt in limbo for ages and now feel like it'll all happen a little too quick, can't win! I ended up only getting 3 hrs sleep last night, I'm noticing at every stage / after meetings etc.. I tend to just have insomnia set in despite being very tired, it's frustrating but I suppose brain just trying to process tons of information thrown at it at times.

It's funny as the oncologist saw my list, turmeric, b12, alpha lipoic acid, fish & black seed oil, mushroom supps, garlic etc.. and said all were fine.  He specifically called out turmeric and said that's ok. Green tea ok. I actually wanted to take them so thought that's great at the time, but on reflection I'm not convinced since reading a bit more into it all and all the helpful comments on here. I've read even b12 can interfere with the efficiency of some chemo.  So for the sake of 6 weeks I think I will be careful with what I take.  As like the HBO, I really don't want to go through all this to find something I took impacted the effectiveness of it all. Really helpful info, thanks.

I've managed to have one session of HBO so far (after a trial).  As I thought I'd be doing it alongside treatment I didn't book in loads, but now realising I'll try to fit in as many as I can beforehand and then lots afterwards (when able to).  I thought my ears would bother me with the pressure but they were fine. Apparently some people may have issues with blocked ears to begin but on persevering it stops being an issue.  Only things post treatment that may be an issue, are if I have bouts of diarrhea and pain still.  I've asked if i can stand as I can't sit for the full hour due to current pain & they said it'd be ok & I'll take a cushion to help.  Please do let me know how you get on with it - I'm hopeful it'll help with recovery  X