Adenoid Cystic Carcinoma

[Lifeafter70]

Last edited Sun Apr 23, 2023, 02:15 PM - Edit history (1)

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

[Diamond_Dog]

1. Re healing vibes, you got it, Lifeafter70

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

[Lifeafter70]

6. Yeah it is pretty rare so not much research out there

And unfortunately chemo has no effect on it

[Ferrets are Cool]

19. That is unreal since chemo kills almost everything it touches....

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]

22. I have read your post

And have been sending healing vibes your way

[Ferrets are Cool]

23. Thank you so very much.

Her next hospital stay begins on the 27th.

[Lifeafter70]

30. I will keep your wife in my thoughts

[Peregrine Took]

2. You probably know about these forums plus one clinical trial is still open - but just in case.

God bless your family.

https://accrf.org/living-with-acc/peer-support/

https://clinicaltrials.ucsd.edu/adenoid-cystic-carcinoma

[Lifeafter70]

4. Yes thank you

Last edited Sat Feb 4, 2023, 05:10 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]

13. I hope that he gets in!

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]

14. He is qualified

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

[Faux pas]

3. ...

Healing and comforting vibes for your son and all who know and love him 💕

[Lifeafter70]

5. Thank you

[onecaliberal]

7. Healing peaceful vibes...

hug:

[Lifeafter70]

8. Thanks

[irisblue]

9. Vibes for your son and all your family.

[Lifeafter70]

10. Its been tough

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

[calimary]

18. Hoping right along with ya.

A couple more years doesn’t seem like too much to ask.

[MLAA]

11. Sending healing thoughts your and your dear son's way!

[Lifeafter70]

12. Thank you

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]

27. I think that sounds like a peaceful, serene environment to heal in! Hope you get to visit once

they settle in!

[Sienna86]

15. Sending healing energy to your son

Hope medical research can find a solution.

[Lifeafter70]

16. There are a couple of studies

So there is hope

[paleotn]

17. You got 'em.

[brer cat]

20. Sending vibes to you and your son.

I'm not familiar with this type of cancer. I hope a cure is found.

[hoosierspud]

21. I worked in a pathology lab for 40 years

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]

24. Yes it can be slow growing

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

[Karadeniz]

25. So sorry about what the family has been going through for so long. Healing thoughts, as

Requested.

[stage left]

26. Healing vibes for your son

Lifeafter70 and your wife Ferretsarecool.

[ratchiweenie]

28. I have never even heard of it and I am so sorry it has recurred in your son. Sending a big hug to

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.

[Lifeafter70]

29. I wiil

Thank you

[murielm99]

31. I have never heard of this,

but you and your son will be in my prayers.

This is a good place for support.

[Lifeafter70]

32. Thanks

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]

33. Mentally, some days are harder than others.

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

[Lifeafter70]

34. Keeping up mentally is sometimes harder

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.