topic Re: Starting Radiotherapy in Treatments and side effects

Starting Radiotherapy

Mon, 30 Jan 2012 08:57:57 GMT

Hi Guys Im going to be starting Radio shortly, can any of you guys give me some idea as to what Im in for? I had a tumour removed from Lymph Node left side, Docs have told me left untreated now 50% with radio 80 to 90% recovery. Bit scared as to what to expect, I know about skin rash or sunburn, what else? Need to know guys, please come back cheers Leesa

Re: Starting Radiotherapy

Sunshine006au — Mon, 30 Jan 2012 11:26:15 GMT

Hi Leesa, I haven't had radiation but my dad has, he had vocal chord cancer.Dad had 3 weeks intense radiation & the first 10 days things went well, after that dads throat began to feel sore, he also got the sunburnt look. It does change the way things taste & dad would eat mainly soups near the end of treatment, also the hospital gave dad a tin of sustagen & this was good, it goes down nice & smoothly.The dr had given dad a spray that he could use to numb his throat if it became too painful but dad never used that. I wish you well during your treatment. Please let me know how you go. Big hugs Alison

Re: Starting Radiotherapy

Jax — Tue, 31 Jan 2012 05:22:28 GMT

Hi Leesa, I am starting Radiotherapy next Monday for a Thymic Carcinoma (Chest area). I have been told about the sunburn and have read some information to try sorbolene cream and/or aloe vera gel this helps with the burn and then when the skin peels away, the skin below is nice and supple from keeping it moisturised. I have also been advised that i will also have difficulty swallowing in the later stage of treatment as my oesophogus is going to be treated as well. So I will be on liquid diet and am looking for interesting recipes if anyone has them? I dont feel like eating soup on the 30 degree days we are currently having. My appetite is already waning so dont know if that will get worse with treatment. Hope this information helps a little, I will let you know how i go after week 1. Cheers Jacqui

Re: Starting Radiotherapy

Tue, 31 Jan 2012 09:11:13 GMT

Thanks Jacqui and Alison, Thanks so much for your advice, I know Im not looking forward to it, The sounds of sore throats etc difficult in swallowing, sheesh. But I cant wait to fry any want to be cells, going to kick it and deal with it I reckon. Hope your Dad is doing well now Alison, sounds a journey thats for sure, and Jacqui, good luck with your treatment I will be looking forward to hearing how you get on and I hope it isnt too traumatic for you. Im not sure on recipes myself, but if you find any good ones or I do, Ill pass them on. Good luck and thanks guys.! Hugs Leesa

Re: Starting Radiotherapy

Sunshine006au — Tue, 31 Jan 2012 12:26:30 GMT

Good luck with treatment Leesa & Jacqui. Alison xxx

Re: Starting Radiotherapy

Wed, 01 Feb 2012 05:30:56 GMT

Hey Guys, Update, went to the dentist today, teeth arent up to it, if I went ahead with treatment want to pull the lot of them under general. I have already had a karapandzic job done, my mouth doesnt open as wide which makes it unlikely I could have dentures. Not only that, hearing the dentist point of view re radio killing your salivry glands, having a mouth constantly dry, very sore with scar tissue, not to mention lack of teeth,making life miserable for the rest of it, Ive decided not for me. The hospital dentist has even advised, if it were him, he wouldnt do it unless he had 100% guarantee of cure. I appreciate his honestly, and being a person who believes in quality, not quantity, this is harsh and not foolproof. Hey, your gonna die regardless of what outcome, IM not sure which way to pull now, but I know I would not put my animals thru this let alone me. 80% with no quality, 50% with quality, Id rather be able to eat than live on custard the rest of my life. Ill take my chances. Ill still go to the radio appointment for more info, maybe low does chemo, not sure, but I know I wont be having radio, because I refuse to pull all my teeth. Ive had enough of invasive surgery. This is my life, and Ill live it the way Im going to. Not what Doctors think. Good luck to the rest of you. Hugs Leesa

Re: Starting Radiotherapy

Sunshine006au — Wed, 01 Feb 2012 11:57:47 GMT

Hi Leesa, I agree with you, it's your life & you make the choices. Goodluck with everything (((Hugs))) Alison

Re: Starting Radiotherapy

CJF — Thu, 02 Feb 2012 11:31:53 GMT

Hi Leesa, I've just caught up with your messages so am not sure of your cancer and previous surgeries but this is my experience. I had 7 1/2 weeks radiotherapy to my neck after tongue cancer and neck cancer. My throat became very raw but as the tongue and subsequent neck surgery had left everything numb, the pain was not too bad. I had all of the anaesthetic medicines etc and still managed to eat enough to avoid a PEG. I ate tofu and other solid soft foods but really soft foods were to hard to swallow. My neck became very red, sore and it peeled and bled. The oncologist was fantastic and gave me cream - they all seem to have their own preferred cream. I also used the juice of the aloevera plant on my neck after I finished treatment and drank aloevera juice. The worst side effects were feeling sick - I eventually asked for medication, and the tiredness. It lasted a long time - I feel like i lost a year. 5 years later the tongue and neck cancer has not reappeared. Recently I had to have a tooth removed and underwent 6 weeks of Hyperbaric Therapy to promote healing and avoid ostoesradionecrocis - basically dead bone caused by radiotherapy - ie the jaw. The treatment seems to have been successful but there have been a couple of unwanted side effects. I may not have developed osteoradionecorosis without the therapy, but there were a number of patients under going treatment with me who did have terrible trouble with their jaws. Radiotherapy can certainly affect your jaw and teeth. I went to a dental pathologist prior to the radiotherapy who prescribed gels and mousses to strengthen my teeth before radiation. I have only lost one tooth so one gap is not too bad, although combined with a '3/4' tongue, eating is still difficult. Hopefully i won't loose any more teeth. You are faced with a difficult decisions - and not many options. We all need to do what is right for ourselves so I guess my advice is get all the information and expert advice you can so your decision is the best one for you. thinking of you CJF

Re: Starting Radiotherapy

Sat, 04 Feb 2012 06:40:32 GMT

Hi CJF, Thanks for your advice, yeah its not easy hey, dealing with this stuff. Update is, went to oncologist who has said that I only need to lose 2 teeth re back where lymph node was, thats better than the lot of my teeth at this point. The radiation isnt going anywhere near my mouth thank god for that, its based at the neck where the lymph was and also during operation, tumor burst (one of those that has alot of fluid, youd think they would have aspirated it first before operating, oh well thats what I would have done) so due to that and as well as it trying to adhere to my submandilur, my oncologist says it always leaves something behind. So now my news is I will do the treatment, Im damned if I do, and Im damned if I dont, but I am MORE damned if I dont. My oncologist reckons with treatment that they shouldnt see me anymore after that and that I will go on to living as if it didnt happen, (mind you I have the scars etc) but If I dont do treatment, I am guaranteed that they will see me again. I know my throat will be involved and Im hoping that the jaw will be ok, but interesting on that therapy, can you give me more info on that, I am in Qld regional (outside of Toowoomba) be willing to try. ROQ have been brilliant, being a private institution they are going to bulk bill me and I just have to pay for creams etc. I havent been fitted for mask etc yet. next stage is the dentist to remove yet more body parts, goddamn bloody SCC, Im tired of it costing me money and getting a bloody free ride on my body, Im going to cook the mongrel dead. Im strong, and Ill face this and I will WIN! hugs to you all Leesa

Re: Starting Radiotherapy

SILLY — Fri, 17 Feb 2012 15:21:09 GMT

The side effects depend on what part of the body is radiated. I had IMRT which allows target areas to receive high doses with surrounding ares being less affected. My nasal cavity ,tear duct and eye sac were the target areas. I had and still do have slight facial reddening and under my eye looks a little bruised. I was told to keep my whole face out of direct sunlight forever now. I lost half of my eyelashes under that eye. About 8 months after radiation finished the eyelashes started to grow. Almost a year later they are still shorter than those of the other eye. Most people I saw at the hospital has much more redness than me but my radiation is not used on most . I was told I would have bald patches on my head but it didn't happen. I was told that it wouldn't affect my eyelashes bit it did. I am so glad it missed my teeth and that my neck was not involed ,hence no dental or eating problems. For me there was a planning day a week or so before and all that had not been explained already was explained then. I wish you well.Keep us posted.

Re: Starting Radiotherapy

Fri, 17 Feb 2012 21:23:29 GMT

Hi Silly, Hope your travelling well. Thanks so much for your info, it is certainly a scary proposition, getting closer now, I have planning on Wed (22.2.12) and then into it I guess. I wish my neck was not involved I can assure you, I just hope I hold up to the treatment,( I tell myself, look there is 1000's of people who have done this before you and they did it, so you can to!) Its been a rude shock as I do not even take panadol/aspirin unless I really need it and now they are going to give my body that harsh stuff just because of a lousy cell. Im supposed to lose a patch of hair to, hope that doesnt happen, but oh well each day 6ft above ground is better than some hair loss! Cheers and hugs

Re: Starting Radiotherapy

SILLY — Sat, 18 Feb 2012 08:48:52 GMT

I wasn't worried about the bald patches as I was told that it would grow back a few months later .If it had happened and looked bad I would've got a wig as they look good . Y ou will also be offered the Look Good Feel Better workshop. W omen bring along make up ,wigs etc. and you are shown how to use the products. When the nurse told me about it I didn't know if I was interested or not and she saisd go along as you get free things. These are donated by many different companies.

Re: Starting Radiotherapy

Sun, 26 Feb 2012 10:42:53 GMT

Hey Everyone, Well my love affair with the Radio Machine (Linear thingy isnt it?) officially starts on 7.3.2012 for 6 wks, Im abit daunted, but I know that this has got to be done! (Universe protect my body as best you can). I have another problem though, I dont know if anyone can help me, I had swelling on the left side from my neck dissection, and when I went had my mask moulded, that night my chin started to play up, swell and tingle. It is warm to the touch and comes and goes but never quite goes away, gets uncomfortable. I suspect it is lymph trying to find a new way through the neck, and Im wondering when they put the mask on, did they move it down into the chin area? My next question is, how the hell do I get rid of this? Anyone have suggestions or ideas, treatments? Cheers Leesa

Re: Starting Radiotherapy

Rodney — Mon, 27 Feb 2012 08:22:31 GMT

Hi there sorry I have been tied up and not in this sight , I have had two lots of radiation therapy and yes a neck dissection , I had it 12 months ago and yes my neck is still swollen but it's starting to reshape I was unlucky that they found a mass but lucky that te mass was not cancer only the lynth node but they took a large chunk out and for me it was hard to adapt to , but there are so many more with harder things to cope with. I had the burning etc but try Manuka honey I swear by it the second radiation treatment was a bigger area but I did not feel as bad as I did the first time. Is also really important to try to maintain your weight even though it gets hard to swallow I found the dairy section in the supermarket ate lots of yoghurt and custards . Let me know if I can help , don't worry to much about the mask it's tight fitting but it has to be but you only have it on for a few minutes at a time.

Re: Starting Radiotherapy

bugger — Wed, 14 Mar 2012 14:10:44 GMT

Hi Leesa, If you suspect the swelling is lymphoedema, then check with the following: The Lymphoedema Association of Queensland Australasian Lymphology Association (ALA) Australian Lymphoedema Support Groups From one of these sites, "Early signs and symptoms of lymphoedema can be intermittent and may include: - transient swelling of a limb or other region of the body - Infection (due to lymph stasis) is often the first sign of a problem - feelings of aching, heaviness, stiffness in the affected body part limitation of movement - tightness or temperature changes to areas of the body - clothing, jewellery or shoes may feel tighter - swelling may be aggravated by heat, overuse, sustained positions and prolonged - inactivity and be more obvious at the end of the day" March is lymphoedema awareness month, so now is a good time to get help. All the best with the Rx treatment, symptoms don't usually occur before the 2nd week. It's a tough road ahead, but do whatever you can to maintain nutrition. Hospitals & chemists have a Nestle Product called Resource Plus, its a 360 calorie lactose free drink in a 8fl oz package, bit like Sanitariums Up&Go drinks. If you need strong pain medication and have problems with constipation, ask for Targin. It's still not on the PBS (cost was about $3.50/day) and unknown to many doctors, but provides strong pain relief without some of the side effects.

Re: Starting Radiotherapy

Thu, 15 Mar 2012 03:25:46 GMT

Thanks Rodney and Bugger, Much appreciated. Cheers Leesa

Re: Starting Radiotherapy

Rodney — Sat, 17 Mar 2012 08:14:03 GMT

Hi there hope thiings are going ok for you

Re: Starting Radiotherapy

Rodney — Sat, 17 Mar 2012 08:14:23 GMT

Hi there hope thiings are going ok for you

Re: Starting Radiotherapy

Rodney — Sat, 17 Mar 2012 08:14:37 GMT

Hi there hope thiings are going ok for you

Re: Starting Radiotherapy

Rodney — Sat, 17 Mar 2012 08:14:51 GMT

Hi there hope thiings are going ok for you