Octreotide Injections - Skipping One or More?

@phyllisden
I came across this.
https://www.nature.com/articles/s41419-023-06123-1

A few comments:
1. She was able to complete the 4 treatments - thankfully without any delays. - that was a blessing.
2. As is typical, her blood counts are certainly lower than pre - treatment. We have been advised that about 75% of those completing treatment will have blood levels return to "almost" pre - treatment levels. - again, we are told that "this takes time"
3. In terms of helping her, (A) the SPEC scans confirm the treatment has reached the areas in which the tumors exist (B) terms of tumor "help", the treatment primary function is to result in tumor "stability" vs. tumor size reduction - we are told that tumor size reduction may happen in a relatively small % of those treated. - this would be a huge benefit if it happens.
4. We are advised that PRRT continues to "work" beyond the end of treatment - how long ?? it depends on each individual. The results of post - treatment scans will tell the story for each patient.
5. As others have posted, diet, hydration, exercise and a positive attitude all are important in this journey.
Please understand I am not a medically trained professional - the above items are exclusively results of her treatment, our research and comments from her treatment team.

We wish all the best to you and to your son,
Mark

@markmark007 Hey Mark,
I was on the self administered daily shots for about a month and a half before my doctor switched me to the IM once a month version. I was supposed to get another shot last week, but asked to be taken off, at least until they confirmed for sure I have DIPNECH.
To answer your question, I am already experiencing the return of flushing, occasional coughing and annoying phlegm in the back of my throat. I don't know if your wife had any of those before taking the shot, but I did. If you or your wife are worried about skipping, you might ask your doctor about the daily injections. Being self administered, you can still travel and still get a version of the med. I thought they were beneficial. Hope that helps in some way. If your doctor agrees, there are cases you can buy to keep the vials cold. I bought mine on Amazon. Blessings 💕

@nannybb
I see that you are waiting for confirmation of a DIPNECH diagnosis. What type of tests are being done to determine DIPNECH?

I am not sure who is asking me about diagnostic methods for DIPNECH. I am thinking Mark? I can give you the short version as I understand it, or a longer one in my case because of newly found cardio involvement. Short version: Actual confirmation- PET scan with a specialized dye. Sometimes they do show up in other scans such as a bone scan or CAT. I think it depends on the size of the tumors. If you do not already know, they start usually quite small, making them difficult to detect until they begin to actually grow.
Long version: The consideration of presentation in a pt. i.e. facial flushing, coughing, phlegm in the back of throat.
I had been telling my GP even before my lung surgery that I was having chest pains irregular heart rhythm, and coughing up phlegm. She repeatedly downplayed each symptom. In fact, I went to the E.R. more than once with the same complaints. She finally ordered a stress test and I wore a heart monitor (of which I questioned it's placement) My GP only listened to my heart for literally seconds. She kept pronouncing it a possible heart murmur or slight arrhythmia. And I want to insert in here - DIPNECH can be mistakenly misdiagnosed as asthma or COPD, as there are similar symptoms.
I just had an echo. I believe it is my tricuspid valve that showed up regurgitating. I did more research and found heart involvement or Pulmonary Carcinoid/DIPNECH can also be tied into the cardiac component as well.
So, as I understand it, as least in my case, it was the co-mobilities that have set a picture for the final diagnosis of DIPNECH. To make it even more complicated, you can have DIPNECH with or (I am not sure of this) not turning slowly into carcinoid tumors (a type of NET)
NETs can also be found in the digestive tract. I do not know all that entails, as I have been overwhelmed with the knowledge of the lung version and that research alone.
Sorry the long version is SO long, but it is from my experiences and my research, and from the excellent knowledge gained from the precious people on this website. Blessings 💕

@nannybb
Thank you for the added information about a DIPNECH diagnosis. In the first sentence of your post, you said: "I am not sure who is asking me about diagnostic methods for DIPNECH." If you look above your post, you will see that you were replying to me. Whenever you hit the "Reply" button, the post is addressed to the person who posted it. I hope that helps!

I can certainly understand that this is a complicated situation for you. I hope that further testing will put your mind at ease, as you will know more about what you are dealing with. I will look forward to hearing from you again.

Will you keep posting with questions and updates?

@hopeful33250 Of course. I know when you hit reply the person's name comes up, but I was confused when I saw yours because you are a mentor, correct? I always think of you and others in that roll as "Masters" and myself as a little grasshopper.
I have been doing so much research since the heart component was attached to my Carcinoid issues. I know you have been reading my posts and that you are aware I am on my 8th doctor including pain specialist and pulmonary etc. I DO get confused as to who I have already spoken to with question etc. I have to continually go back to the beginning of things....lol here, and in real life. I have to find a new pulmonary and cardiac now because the first two no longer take United.
Thanks for assuring me of seeing to whom I am addressing. 😵‍💫

@nannybb
I understand what it is like to tell your story on a forum like this. It can be difficult to sort out who read your posts and who might not have caught the details!

While I'm a mentor, I'm really not a Master (however, I do appreciate your comment). I'm a patient like yourself, and I appreciate all the details you provided about your diagnosis.

You are being proactive in your care, and I certainly admire that. Wishing you well as you continue the journey.

@hopeful33250 I did not know you were a patient. Bless you.
I have become proactive because I'm at the point that I'm angry, frustrated, and confused. I've seriously learned more in here than from the doctors I've had. It amazes me how they became specialists (most of the time.)
And thank you for your kind words of encouragement. 💕

@nannybb
Yes, all of the mentors are patients! My NET surgeries have been in the digestive tract. I'm looking forward to hearing from you again!