adenoid cystic carcinoma

[Lorraine4132]

Hi Wombat

You have had such a hard time with your treatment.  If I had to endure what you went through, I would have pulled out.  In fact I was close to doing that until I got treatment for oral thrush and was told to keep up the pain meds.  I am really a bit of a squib.

I found Lucas Paw Paw Ointment (red tube) to be fabulous for burns.  I only had a tiny one where my neck met my shoulder.  Perhaps my skin is so tough from years and years at the beach.

I wish you all the best as you recover. 

Cheers

Lorraine

[chrisuk]

I finished 6 weeks of radiotherapy after surgery to remove my parotid thanks to ACC. I must admit I did question whether I should have bothered. I had the lump for years before the doctors realised it was malignant but it had never caused any problems or pain. I found the dry sore mouth very distressing in the weeks after treatment had finished and I began to wish I had taken my chances with the cancer!

Well 5 months later my mouth is a little better but I still have to sip water with every mouthful of food. Hopefully it will continue to improve but no-one knows for sure. I just try and take it a day at a time now.

[Wombat]

Hi Chris - yes, you must be pissed off that ACC keeps "giving". I think that's what makes me the most angry - that what happens next is so unclear/unknown. I have just assumed that my taste and throat will improve from 31 March. I guess I need to stop assuming and take your approach. That way I won't be disappointed. Here's hoping that the next few weeks do show signs of an upside for you.

[MM]

Hi Archie and Wombat,

I am now nearly 4 months post treatment, have had my follow up PET scan (3 months) which showed nothing, not that I was expecting anything but had worked myself into a frenzy prior to it!

My new normal is that mostly taste has returned, a few things don't taste perhaps as good as they did and I avoid a few foods that I used to enjoy...although my taste for chocolate has returned! My mouth at times is sore chewing and I can't seem to open my mouth quite as wide (a minor thing). The dry mouth at night is the most noticeable side effect, I wake having to take sips of water particularly in the early morning. It is worse if I am dehydrated. Fortunately I often get up early to go for a bike ride so it doesn't destroy my sleep patterns. I also apparently snore a little..payback time perhaps to my husband but not a great thing! The 2 weeks post treatment were definitely the worse but up from there. Look after yourselves it does improve. 

[Tassiedevil]

Hi to all I AM STILL HERE. Its been a roller coaster ride for the last couple of weeks but I have come out the other side. As you know this disease known as ACC  can be a cruel master and unrelenting in its course, at least it has in my case, I was to see my oncologist today to review my last CT scan to check on the progress in my lungs but I received a phone call to cancel the appointment due to illness. My specialist is not feeling the best, I hope he gets well soon, but it brings things into sharp perspective, it is not all about me all the time there are people tending us who are under the pump as well. He didn't look at the top of his game last time we met, he is a good person who cares for his patients and I wouldn't have any other treat me. I will wait until he is feeling up to the task and see him for the results of the scan. I have no doubt that all his patients feel the same as I do about him. To every one keep your chin up and keep talking to each other so we can pass on knowledge gathered.       Craig 

[archie]

now one week since radiation and there has been a slight change. My sore mouth has eased off a bit, I think it is because of my use of a sodium bircarbonate mouth wash. The commercial one provided by my cancer care Hospital Unit was a little harsh, but the one the Pharmacy made up for me was a lot smoother. A small mouthful every few hours  made a difference.  

How long after finishing the Radiation did you see your Oncologist?  I get to see mine in about 7 weeks time. It will be the same day as I go to see the Surgeons. That should make an interesting day. At this stage it appears that I am being left alone to get over all that has happened since diagnoses on Christmas Eve. This last week has been the quietist and most chillaxing  I have been since Christmas and could handle a few more like it with ease.. The one thing I won’t volunteer for is another MRI. The noises nearly sent me off my rocker.  My Surgeon likes them as he believes he can see more of what is going on. 

Well that’s me for another week. Happy days to all.  ..archie...

[Tassiedevil]

Gday Archie, Craig here. Glad to hear you are on the mend, the mouthwash does make a difference so keep it up and use as necessary, I found in the early stages that regular use helped the healing progress faster. Especially first thing in the morning after waking. My first Oncology visit was 2 weeks after the last treatment of radiation, but I also underwent Chemo at the same time so there were different things happening with me. I can't say much about the MRI as I never had one at that stage of my treatment. I did have one 6 months after to make sure it hadn't metastasized to my bones as it has better resolution and also to find out what damage had been done to my shoulders during surgery. Sure it takes longer than a CT but it can show more detail for your surgeon and other medicos to make their diagnosis. Hope this helps. Craig 

[Lampwork54]

Hi Katekat,

Thank you.  I finally got the papers I needed signed from the superannuation fund.  They sent a few wrong ones initially.  I had all the paperwork filled in, reports attached from my hospital records and was waiting on my appointment earlier this week with my Surgeon to see if he would sign it.  I was sick with nerves over it.  The day before the appointment I received a text message saying that all appointments had been cancelled and no follow up appointments scheduled.  I could just leave the paperwork or I could just try one more time.  I wrote to the Surgeon and attached all the paperwork.  I outlined the clause about having to die within 24 months and told him that I thought he would not be able to guarantee that I would but would also not be able to guarantee that I wouldn't die within the 24 months.  Received a text yesterday for a conference call from him today.

It was a bit funny because my letter had concerned the Surgeon.  He thought I was really depressed and negative about my future.  I assured him that I wasn't and we discussed the pros and cons.  He was happy to sign the papers as no one is guaranteed anything in regards to life expectancy especially right now in the midst of Covid-19.   Huge relief.  I just need my GP to sign the papers now and see what happens.  I will have to ring and drop off papers as GP also doing phone consultations only.  Will keep you updated.  There's also a deadline on getting the papers back to the Superannuation board before the 13/4/2020.  May make it by the skin of my teeth.  

Cross your fingers. x

[Wombat]

Morning all. 

So, I'm two weeks post the last "zap". Am finally getting some improvement in the throat (can swallow water now without too much pain). Still on soft foods (weet bix is now by best friend).  Though, still also losing weight.  I have two queries:

1. Did anyone have ulcers that made eating difficult? This is adding to my challenges. The Mucosoothe works for a few minutes.  Bonjella just kills. Anybody found other remedies?

2. When did the dry mouth improve? I have to chew gum constantly for this and think that this "solution" might be impacting the ulcers?     

Steph (AKA Wombat)

[chrisuk]

Hi Steph,

I'm 5 months post radiotherapy for ACC on the Parotid gland. Bear in mind that everyone is different.

I have now got a little more saliva but I find some foods so difficult to eat that I now avoid them, even though some were my favourites (steak, french fries, chicken, bacon). I've lost 13 kilos since I began radiotherapy in September 2019 but I was overweight to begin with so it hasn't been a disaster! The inside of my mouth is still dry and a bit sore but I've noticed some days are better than others. I still have to take sips of water with food although pasta with a sauce and cereals with milk are quite easy to eat. I was told by the support nurse that things might improve over time, but also they might not! Sorry I couldn't give you better news. The dry sore mouth is without doubt the most upsetting side effect but we just have to take it a day at a time and keep our fingers crossed that it will gradually improve. 

Good luck,

Chris