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Medical Forum / Diseases and Disorders / Cancer / July 2009My daughter starts chemotherapy on Wednesday.
She was diagnosed with cancer of the oesophagus earlier this month. It is stage 4. She is 45 y.o. and I wondered if anyone here would like to comment, or offer advice.  SignatureAnneJ > She was diagnosed with cancer of the oesophagus > earlier this month. It is stage 4. > > She is 45 y.o. and I wondered if anyone here would > like to comment, or offer advice. Go to this site and have her sign up for the *head and neck* cancer list serve. There are some wonderful people who will be happy to share with her and answer questions. http://www.acor.org/mlists/mlists.html Are they going to do radiation? If they have suggested it, get her to a major cancer center. DO NOT let a local cancer center do radiation on her. Johns Hopkins in Maryland, MD Anderson Cancer Center in Houston and Memorial-Sloan Kettering in New York City are the 3 best centers for H&N cancer in the world. Head and Neck radiation is the most evil of all radiation treatments. It has the worst side-effects and requires a specialized support team including special dental professionals. Many of the side effects of H&N radiation are life-long. I cannot stress how important it is to have the support available only at one of the above centers. If I have scared anyone, then I've done my job. SignatureJanet Wilder Way-the-heck-south Texas Spelling doesn't count. Cooking does. > Go to this site and have her sign up for the *head and neck* cancer list > serve. There are some wonderful people who will be happy to share with > her and answer questions. > http://www.acor.org/mlists/mlists.html Thank you Janet. I will have my grand-daughter sign up to the group. She will be able to post any queries her mother has, and ask for advice on her behalf. I'll hang around in here, when I have any time to spare. Since I will be taking on some of the responsibility of looking after my daughter, that may not be too much, as I am still working myself - and the business will also need "looking after". We live in Perth (Scotland) and the treatment will be carried out at Ninewells hospital in Dundee (20 miles distant). My daughter will be admitted on Wednesday morning and hopefully will be able to return home on Thursday, early evening. She is unable to work at present, due to tiredness, and the fact that her work frequently entails working 12 hours at a time. She has been suffering from exhaustion for quite some time now, and feeling generally "out of sorts" but put it down to an operation she had, to remove her gallbladder, quite some time ago. SignatureAnneJ > She was diagnosed with cancer of the oesophagus > earlier this month. It is stage 4. > > She is 45 y.o. and I wondered if anyone here would > like to comment, or offer advice. Anne, J will be chiming in soon with info and web sites, so in the meantime I'll try to suggest things that be in her future. If they attack with radiation, she will probably get a feeding tube installed. I had radiation to Lung Cancer tumor that was near my esophagus. As the esophagus gets radiation, it will get radiation burns that are described as like a sunburn in your throat. Food will irritate the throat and swallowing will be painful if not impossible. I survived on smoothies and milk shakes. Soft scrambled eggs and yogurt were about the only thing I could get down with a minimal pain. Thus the feeding tube will make it easier to get nutrition. The important thing is to keep her weight up. Not eating will guarantee weight loss. Lots of ice cream was my solution. Popsicles will help to cool and soothe throat and hydrate her mouth. Others here will have more info, but I just wanted to get you started with some info. Best wishes for your daughter. Bobert SignatureEccentric is crazy with money. Bobert In Central California > > She was diagnosed with cancer of the oesophagus > > earlier this month. It is stage 4. > > > > She is 45 y.o. and I wondered if anyone here would > > like to comment, or offer advice. > Anne, > J will be chiming in soon with info and web sites, so in the meantime > I'll try to suggest things that be in her future. > If they attack with radiation, she will probably get a feeding tube > installed. I had radiation to Lung Cancer tumor that was near my [quoted text clipped - 7 lines] > cream was my solution. Popsicles will help to cool and soothe throat > and hydrate her mouth. > Others here will have more info, but I just wanted to get you started > with some info. Best wishes for your daughter. Thank you Bobert. There will not be any radiation. The first specialist she saw said that they would do three courses of chemotherapy, then a scan to see if the tumour had shrunk, then possibly more chemo before removal, and then further chemo to ensure that the lymphatic system was clear. Then she saw the oncologist, and removal of the tumour was never mentioned. They are going to do six courses of chemo, spaced three-weeks apart, and see how it goes from there. The cancer is in the lymphatic system, they told her. We are in the UK, by the way, so treatment is free on the NHS. SignatureAnneJ > > > She was diagnosed with cancer of the oesophagus > > > earlier this month. It is stage 4. [quoted text clipped - 18 lines] > > We are in the UK, by the way, so treatment is free on the NHS. Since you're in Scotland, here's the Scottish Intercollegiate Guidelines http://www.sign.ac.uk/guidelines/published/numlist.html Management of oesophageal and gastric cancer is # 87 I'm unsure whether your grand-daughter should read it. Depends on her age and ability to cope with it. It will be interestiing to hear which type (Squamous or Adeno) she has and which chemo (or chemos) they'll be giving her. Take care. Sounds like you'll be very busy. J > Since you're in Scotland, here's the Scottish Intercollegiate Guidelines > http://www.sign.ac.uk/guidelines/published/numlist.html > Management of oesophageal and gastric cancer is # 87 > I'm unsure whether your grand-daughter should read it. > Depends on her age and ability to cope with it. My grand-daughter is almost 27, and is a very capable young woman. (She actually runs my business for me.) She has attended every appointment with her mother, taking the stance that two people will be better able to remember all that is said. She is the one who read all the literature available, and asked most of the questions, when talking to the oncologist. She is of the opinion that, if you don't know which questions to ask, you may not get all the answers... > It will be interestiing to hear which type (Squamous or Adeno) > she has and which chemo (or chemos) they'll be giving her. I will tell my grand-daughter to ask, if she doesn't already know. > Take care. Sounds like you'll be very busy. I have some idea of what lies ahead. I nursed my ex-husband, all on my own, while he died of cancer, which had started in his bowel but spread throughout his body before being discovered. Not that there wasn't help available, he just preferred not to have any "strangers" involved. He had attended many appointments with his GP, for four years, while they treated what they thought was IBS. Still and all, I will have to take more to do with the running of my business, to give my grand-daughter more time with her mother. This is as she wants it. SignatureAnneJ >> Since you're in Scotland, here's the Scottish Intercollegiate >> Guidelines http://www.sign.ac.uk/guidelines/published/numlist.html [quoted text clipped - 31 lines] > of my business, to give my grand-daughter more time with > her mother. This is as she wants it. There has already been some great advice here, so I will not duplicate it. While not having gone through chemo (knock on wood), I did have six weeks of helical radiation through the skull for a malignant paraganglioma in the right jugular foramen. My one piece of advice in helping out your daughter: Rather than calling up and asking "how can I help", show up and just help. Bring a meal, clean up a room, do a load of laundry, walk her pets, if any. If she's feeling like regurgitated food herself and asks to be left alone for a while, don't take any offense - it knocks the wind right out of you and manners might not be at very the top of the list. Most of all, be her mom - Let her know you love her, you're proud of her and you'll be there for her if she needs it at 45, just as you were there for her when she was 4. That's what my mom did right after surgery for me (I was 35 at the time and went from the hospital to my mom's for a few days) - It was *just* the right thing for mom to do :) (That and Mom's pea soup was really easy to get down, too :) :) :) SignatureMarc Bissonnette > Since you're in Scotland, here's the Scottish Intercollegiate Guidelineshttp://www.sign.ac.uk/guidelines/published/numlist.html > Management of oesophageal and gastric cancer is # 87 [quoted text clipped - 4 lines] > It will be interestiing to hear which type (Squamous or Adeno) > she has and which chemo (or chemos) they'll be giving her. It's Adeno, or so she remembers from her first consulation with her specialist. They are giving her E C F, according to my granddaughter who went with her when she was admitted to the hospital today. (Sorry about the delay in my reply - my news server appears to have gone AWOL, and I'm having to post through Google. Such a cumbersome procedure!) > Take care. Sounds like you'll be very busy. I think we're in for a hectic six months or so... -- AnneJ > > It will be interestiing to hear which type (Squamous or Adeno) > > she has and which chemo (or chemos) they'll be giving her. [quoted text clipped - 11 lines] > > I think we're in for a hectic six months or so... I will be here, as long as the computer (and body) stay "humming". :) Thanks for the info. I see that zednet is making changes and having glitches. When such happens with my ISP, there's often difficulties accessing and/or error messages. There was also a message there about ZIMACS (which is in your headers). Don't give up on them yet. I see you're a Usenet pro. :) I have a list of other resources (using newsreaders instead of Google) should the problems continue (some free). It's important to (be able to) block certain posters here. Since you weren't archiving, other Googlers may not see your posts. No apologies necessary. We understand you've other priorities. How did things go at the hospital? I'll watch for your updates. Take care. J > I will be here, as long as the computer (and body) stay "humming". :) > Thanks for the info. > > I see that zetnet is making changes and having glitches. Can there be anything more aggravating than an organisation which buys a small ISP primarily because of their "loyal customer base" then proceeds to make changes without notification - and when things go wrong seem not to even bother trying to fix the problem? We're all feeling a bit like "mushrooms" except there's no feeding of any kind going on. I started up a Google group for Zetnet subscribers when Breathe took over, so that we had somewhere to go to keep in touch when things went wrong, and I didn't even realise just how "wrong" things were going to be... Subscribers are leaving Zetnet in droves, now. I'm keeping in touch, via Facebook, with many friends and family who have Facebook accounts, Some others are kept informed via SMS text messages, and one or two I call on the phone. I'm encouraging my daughter to set up a blog, so that they can access that. It all takes time, and I have so much more to do at the business, since my grand-daughter who is normally in charge there is spending a lot of time with her mother - but the letters and quotes must still go out, or the business ceases to function, and we'll all be in the "deep and smelly". > When such happens with my ISP, there's often difficulties accessing and/or > error messages. > There was also a message there about ZIMACS (which is in your headers). > > Don't give up on them yet. I'm about ready to. I just can't waste time with an ISP that has, to all intents and purposes, ceased to function. My son is in the process of sorting email facilities from my own domain, but I'll need to sort out something reliable for newsgroup access. That's what's keeping me sane - at the moment (although some times I wonder!) ;-) > I see you're a Usenet pro. :) Well, I've been around for what seems like a very long time... <G> > I have a list of other resources (using newsreaders instead of Google) > should the problems continue (some free). [quoted text clipped - 3 lines] > No apologies necessary. We understand you've other priorities. > How did things go at the hospital? The hospital staff were wonderful - and the Maggie's centre, well, there is no praise high enough for the helpers or the concept. Every hospital with the facilities to treat cancer should have a Maggie's Centre... http://www.maggiescentres.org/maggies/maggiescentres/home/centres/dundee/introdu ction.html?gclid=CP2NqKmiuZsCFZgU4wodvBLUCQ > I'll watch for your updates. All seems to be well, today. We'll see how things go for the next week or so. My daughter has an appointment to be measured for a wig - isn't the NHS wonderful! How we would have coped if we had to pay for treatment, I hate to think... I've had a diagnosis for a persistent rash on my calves - it's dermatitis. Something I've never suffered from in all my 67 years! Worry can manifest itself in so many different ways, can't it. > Take care. Thank you J -- AnneJ > I'm keeping in touch, via Facebook, with many friends and family who > have Facebook accounts, Some others are kept informed via SMS [quoted text clipped - 27 lines] > it's dermatitis. Something I've never suffered from in all my 67 years! > Worry can manifest itself in so many different ways, can't it. Hello Anne, I'm pleased to hear about Maggie's. I'd heard about one centre before but was unaware they had their own webpage, so much to offer and such interesting and fun fund-raising events. Looks like a wonderful resource for your daughter. Carers can go there as well; for your grand-daughter or you, if you find you would like a relaxing break. As to blogs, I posted about Caring Bridge blogs http://www.caringbridge.org/ in case you're daughter is interested. I've heard good things about it and is great to keep everyone (who has a computer) informed. I'm sorry to hear about the dermatitis. For some reason, oatmeal bath comes to mind, but that could be all wrong. (haven't researched it). I did get something like that a few years back, but determined it was too much bleach (from 2 sources), in the wash. This newsgroup has been quiet for a number of reasons. This weekend's been the US 4th of July celebration. If you find it too quiet, there's over 2,200 people on the ACOR Esophageal Cancers Discussion List It's Sunday here, Hopefully you've had some time to relax a bit? Best, J > I was pleased to hear about Maggie's. I'd heard about one centre before > but was unaware they had their own webpage, so much to offer and such [quoted text clipped - 6 lines] > I've heard good things about it and is great to keep everyone (who has a > computer) informed. Yes, I told Marianne about Caring Bridge, and I believe that she has read some of the blogs, but hasn't been inspired, as yet, to contribute. I'm sure that she finds it encouraging to find that others are going through the same see-saw of emotions that she is experiencing. > I'm sorry to hear about the dermatitis. For some reason, oatmeal bath > comes to mind, but that could be all wrong. (haven't researched it). > I did get something like that a few years back, but determined it was > too much bleach (from 2 sources), in the wash. My youngest son is currently in India, and I have asked him to send me some Neem oil, which is said to be a sovereign remedy for many skin complaints, though I've never actually used it myself. I have an interest in Ayurvedic medicine, as well as "alternative" remedies. > This newsgroup has been quiet for a number of reasons. This weekend's > been the US 4th of July celebration. If you find it too quiet, there's over > 2,200 people on the ACOR Esophageal Cancers Discussion List > > It's Sunday here, Hopefully you've had some time to relax a bit? We had a wonderfully relaxing couple of hours last night - after we had driven some 40+ miles to get some delicious Italian ice cream for Marianne - she accompanied us, and enjoyed herself. Who wouldn't enjoy themselves, sampling ice cream? ;-) A couple of summers ago, I had a "retreat" built at the top of the garden, with views to the mountains to the north, and down the Tay to the east. It was something I had planned for 40 years, and it has been the greatest source of pleasure, more especially now. The peace and solitude heal my soul. Of course there's no electricity installed - that would have spoilt the ambience, so illumination is provided by candles - many, many candles. (I would send you some photos of my views, if only I had an address, and my mail delivery was reliable.) With a glass of chilled white wine - who could ask for more? Last night's entertainment was provided by the neighbours next door. They have two sons living and working in LA, so they held a 4th of July party, with music and fireworks. Very enjoyable it was too. Now I'm off into the garden. The weeds are taking advantage of the current situation... ;-) -- AnneJ > Yes, I told Marianne about Caring Bridge, and I believe that she > has read some of the blogs, but hasn't been inspired, as yet, to [quoted text clipped - 25 lines] > Now I'm off into the garden. The weeds are taking advantage of the > current situation... ;-) Hello Anne, I was pleeased to read you've a solution for the dermatitis. Maybe you could stat the blog for Marianne, including the peaceful photos you describe. Make sure they're thumbnails for those of us on dialup and/or not enough computer "juice". I think it would be a great way to start a blog especially for someone who has a serious illness. Once it's started she may get involved. In any event, you may need to update it, on occasion (so both of you should have access and passwords, whatever is required). Be sure and ask her who she does not want to share (it) with. Just a thought, for what it's worth. Best of luck with the weeds. Rain and grass growing keeps me busy. :) J > She was diagnosed with cancer of the oesophagus > earlier this month. It is stage 4. > > She is 45 y.o. and I wondered if anyone here would > like to comment, or offer advice. Hello Anne, I'm sorry to hear about your daughter. There is no standard treatment for esophageal Stage IV cancer (in BC Canada). I've been following 3 Stage IV (newsgroup) cancer patients and their oncolologists seem to pull it (the treatment plan) together in such a way that the patient feels better. Some travel, some continue to work and/or work on projects they've always wanted to explore or finish. Those would be my hopes for your daughter. The other day I saw a TV documented journey of a little girl who was on chemo a lot. She said that orange juice is great for "chemo mouth". Of course that should be checked with your daughter's consultant or chemo nurse. You'll find other esophageal cancer patients and/or their loved ones at the EC group on the link that Janet posted. Please know you're also welcome here. Please keep in touch and tell us how it's going? Best, J |
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