Octreotide Injections - Skipping One or More?

Hello @markmark007

This is a good question. Has your wife talked with her oncologist about the possible effects of skipping an injection? I'm also wondering if the injection was controlling any particular symptoms?

We have several members who have taken octreotide and I'm going to invite them to this discussion, @vinnie694 @sophiarose. Please know, however, the the best person to answer this question is your wife's doctor.

Will you post again when you get an opinion from her oncologist?

I stopped completely because it wasn’t working
And the side effects were out of control
I was told I could start up again
They only thing that happened to me as the medication left my system is I had very bad low sugar symptoms
I drank a lot of water OJ and ate chocolate

I do lanreotide injections for about 2 years now, but I think they are very similar--after conferring with my doctor I have skipped a month when I was doing another treatment and I have gone 5 weeks instead of 4 when I was out of town on my injection date. I've also delayed injections a week when I was scheduled for a scan and they wanted to be sure the uptake was strong--I've been told it is not an issue to delay an injection now and then--but definitely confer with your doctor. I haven't had any effects from waiting a week.

@markmark007
I take octreotide injections for lung NETS and DIPNECH. My 50+ lung tumors are very slow growing even without the octreotide but the DIPNECH causes bad respiratory symptoms that the octreotide has really improved but it’s a delayed effect. I didn’t skip an injection but one month the nurse didn’t go deep enough with it so all the fluid looked like half of a ping pong ball sitting on top of the injection site that took about 3 weeks to go down. Apparently the octreotide never did absorb because about two months later was the start of a really bad coughing and shortness of breath month after those symptoms had been nearly gone.

I was recently out of state when my injection was due so I just had it two days late when I returned and started my every 28 days again from there. Can she have the injection as soon as she returns? How long past the due date will she be gone?

yes, she can get the injection after returning home.
If no injection is done while away from home, it will be 20 days +/-

Many thanks for your response -
Mark

The oncologist does not think missing one injection will be detrimental.
Injections are a part of PRRT protocol as was determined by her care team. - not necessarily to control symptoms.
Many thanks for your response,
Mark

Many thanks for your input -
We have discussed with her care team.
Mark

I have been on Octreotide for about 7 months, I haven’t missed an injection during that time, I try to look ahead when I’m going to be away and schedule accordingly. I have carcinoid syndrome and the Octreotide has kept the hot flashes away.. I don’t want to risk them coming back..

@markmark007
As your wife has completed the PRRT treatment, do you mind to let us know how far the treatment has helped her ?
Many thanks !!

My son will receive his third dose of PRRT in December and we are anxious to know how it will help.

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