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Lifeafter70

(365 posts)
Sat Feb 4, 2023, 03:07 PM Feb 2023

Adenoid Cystic Carcinoma

Last edited Mon Oct 14, 2024, 03:35 PM - Edit history (2)

Has anyone had experience with this type of cancer? My son was dxed in 2016 has gone through two surgeries and two types of radiation. It has infiltrated his skull base and other critical stuctures. He received palliative gamma knife radiation last October. I do belong to the national acc group but was wondering if anyone on du had heard of this type of cancer. Also would love some healing vibes for him.

Thanks p in California

Update on my son since posting

He has had two scans that show no new progression. Has an appointment with Dr Rodrigues at Washington state in early May to see if he qualifies for clinical trials. He recently closed on a home in aberdeen wa. Five acres with a stream running through the property. His outlook is more positive in hopes of a few more years. Thanks again for all the positive vibes from this group. P


Update
Sadly my son is experiencing the same symptoms he had before his gamma knife radiation. Pain and lose of vision in left eye. He is scheduled for MRI on October 24. Need some good vibes for him. Thanks P

34 replies = new reply since forum marked as read
Highlight: NoneDon't highlight anything 5 newestHighlight 5 most recent replies
Adenoid Cystic Carcinoma (Original Post) Lifeafter70 Feb 2023 OP
Re healing vibes, you got it, Lifeafter70 Diamond_Dog Feb 2023 #1
Yeah it is pretty rare so not much research out there Lifeafter70 Feb 2023 #6
That is unreal since chemo kills almost everything it touches.... Ferrets are Cool Feb 2023 #19
I have read your post Lifeafter70 Feb 2023 #22
Thank you so very much. Ferrets are Cool Feb 2023 #23
I will keep your wife in my thoughts Lifeafter70 Feb 2023 #30
You probably know about these forums plus one clinical trial is still open - but just in case. Peregrine Took Feb 2023 #2
Yes thank you Lifeafter70 Feb 2023 #4
I hope that he gets in! Hope22 Feb 2023 #13
He is qualified Lifeafter70 Feb 2023 #14
... Faux pas Feb 2023 #3
Thank you Lifeafter70 Feb 2023 #5
Healing peaceful vibes... onecaliberal Feb 2023 #7
Thanks Lifeafter70 Feb 2023 #8
Vibes for your son and all your family. irisblue Feb 2023 #9
Its been tough Lifeafter70 Feb 2023 #10
Hoping right along with ya. calimary Feb 2023 #18
Sending healing thoughts your and your dear son's way! MLAA Feb 2023 #11
Thank you Lifeafter70 Feb 2023 #12
I think that sounds like a peaceful, serene environment to heal in! Hope you get to visit once MLAA Feb 2023 #27
Sending healing energy to your son Sienna86 Feb 2023 #15
There are a couple of studies Lifeafter70 Feb 2023 #16
You got 'em. paleotn Feb 2023 #17
Sending vibes to you and your son. brer cat Feb 2023 #20
I worked in a pathology lab for 40 years hoosierspud Feb 2023 #21
Yes it can be slow growing Lifeafter70 Feb 2023 #24
So sorry about what the family has been going through for so long. Healing thoughts, as Karadeniz Feb 2023 #25
Healing vibes for your son stage left Feb 2023 #26
I have never even heard of it and I am so sorry it has recurred in your son. Sending a big hug to ratchiweenie Feb 2023 #28
I wiil Lifeafter70 Feb 2023 #29
I have never heard of this, murielm99 Feb 2023 #31
Thanks Lifeafter70 Feb 2023 #32
Mentally, some days are harder than others. murielm99 Feb 2023 #33
Keeping up mentally is sometimes harder Lifeafter70 Feb 2023 #34

Diamond_Dog

(34,894 posts)
1. Re healing vibes, you got it, Lifeafter70
Sat Feb 4, 2023, 03:16 PM
Feb 2023

I’ve never heard of ACC but here’s hoping for the best possible outcome for your son.

I am a cancer survivor, 15 years now

Ferrets are Cool

(21,961 posts)
19. That is unreal since chemo kills almost everything it touches....
Sat Feb 4, 2023, 05:27 PM
Feb 2023

wifey survived kidney cancer, stage 4 lymphoma and now is facing a bone marrow transplant brought on by the chemo she received during the lymphoma treatments. Sending out healing vibes.

Lifeafter70

(365 posts)
4. Yes thank you
Sat Feb 4, 2023, 03:26 PM
Feb 2023

Last edited Sat Feb 4, 2023, 04:10 PM - Edit history (1)

There is a trial starting end of February at his cancer clinic in Seattle that he hopes to be a part of.

Hope22

(2,957 posts)
13. I hope that he gets in!
Sat Feb 4, 2023, 04:43 PM
Feb 2023

Love and healing energy to all of you. We really have to love each other up in this life! Here’s to hoping he gets into the trial!💗💗💗🙏

Lifeafter70

(365 posts)
14. He is qualified
Sat Feb 4, 2023, 04:48 PM
Feb 2023

But his doc isn't sure that the side effects are worth the results based on his advanced case. The only reason he would do it is to advance knowledge for future research. He is in palliative care now

Lifeafter70

(365 posts)
10. Its been tough
Sat Feb 4, 2023, 04:08 PM
Feb 2023

But we were lucky to get 5 years between reccurence. Hoping to get a couple of more years with the last radiation treatment.

Lifeafter70

(365 posts)
12. Thank you
Sat Feb 4, 2023, 04:41 PM
Feb 2023

All the good vibes have brightened my day. My son is moving forward taking one day at a time. He an his SO have just entered escrow for their dream home in Washington State. Hopes to move in early next month. 5 acres of wooded tranquility with a stream running through the property.

MLAA

(18,633 posts)
27. I think that sounds like a peaceful, serene environment to heal in! Hope you get to visit once
Sat Feb 4, 2023, 06:58 PM
Feb 2023

they settle in!

hoosierspud

(176 posts)
21. I worked in a pathology lab for 40 years
Sat Feb 4, 2023, 05:28 PM
Feb 2023

as a cytotechnologist. We're the people who look at Pap smears and specimens from all other parts of the body.

I'm so sorry about your son. I hope he is able to get some good treatment.

I've seen a few ACC's over the course of my career. They're not an extremely aggressive cancer, but they can recur and metastasize years later. I know of a couple cases where ACC showed up in the lung which usually is a metastasis, rather than a primary. Both patients denied having cancer in the past, but some digging on the part of their caregivers discovered salivary gland tumors in their past.

Under the microscope, they are very distinctive and have a really cool structure. (Yes, non-pathology people think that we're nuts talking and thinking like that).

Lifeafter70

(365 posts)
24. Yes it can be slow growing
Sat Feb 4, 2023, 06:00 PM
Feb 2023

He does have some in lungs but at nodule stage. What is more concernig is skull base and major nerves that have been invaded just went through gamma knife in October

ratchiweenie

(7,933 posts)
28. I have never even heard of it and I am so sorry it has recurred in your son. Sending a big hug to
Sat Feb 4, 2023, 07:07 PM
Feb 2023

you and your son and to all those who are going through this very painful ordeal with you. Remember to take care of yourself too. We tend to forget that with all the pain and trauma, we can ignore our own basic health. Feel free to come here and chat anytime and keep us up to date on his progress.

murielm99

(31,462 posts)
31. I have never heard of this,
Sat Feb 11, 2023, 06:44 AM
Feb 2023

but you and your son will be in my prayers.

This is a good place for support.

Lifeafter70

(365 posts)
32. Thanks
Sat Feb 11, 2023, 12:11 PM
Feb 2023

How are you doing? Have been thinking of you and ferrets wife hope all is well considering the health battles you have been going through.

murielm99

(31,462 posts)
33. Mentally, some days are harder than others.
Sat Feb 11, 2023, 02:22 PM
Feb 2023

I hope to be around for a few more years to keep fighting the good fight.

Lifeafter70

(365 posts)
34. Keeping up mentally is sometimes harder
Sat Feb 11, 2023, 03:48 PM
Feb 2023

Than fighting cancer. My son has bouts of depression, it can be more devastating than the cancer. Feel free to dm if you just need to unload.

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