Octreotide Injections - Skipping One or More?

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

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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

Jump to this post

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

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@markmark007
Thank you for your prompt reply. Wonder if PRRT is the first treatment option prescribed for your wife instead of the more common octreotide injection?

All the best to you and your wife.

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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?

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I have Malignant Neuroendocrine Tumors of the Lung and have been in treatment with Sandostatin LAR every 28 days since November 2022. It has helped with my coughing, and the tumors remain the same size. However, the side effects of Sandostatin LAR are significant, and I felt my body needed relief. I conferred with my Oncologist, and while he mentioned this treatment would be continuous, I skipped a dose under his supervision to see whether the side effects would subside. He suspects malabsorption and will treat it accordingly.
The side effects did reduce during the relief, except the constant coughing returned, and shortness of breath escalated. I have since then had two injections, and the side effects resurfaced. Sometimes, I do not know what is worse: the treatment’s side effects or the disease itself. Everyone is different, so what is affecting me may not be affecting anyone else.

I pray for everyone's improvement and strive to manage this journey.

Many Blessings.

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Just adding a little update on my experience with PRRT to Mark's response. I completed my last (of 4) PRRT treatments in January 2022--so this January will be 2 years since completion. I got both tumor shrinkage and stability and some of the shrinkage was significant. I've continued with blood work and scans at Mayo Arizona every 6 months and I just completed a visit a few weeks ago. I continued to see some shrinkage for about a year after completion and stability after that. Some of my blood values were moderately lower than normal after treatment and gradually came back up over time. There are still a few results that are at the very low end of normal or even sometimes just out of normal range. My doctors say that is pretty normal for this treatment and not something to be overly concerned about. Keep up a good nutrition program and as much exercise as you can do--both really help to get everything back close to normal and reduce any lingering fatigue. Wishing all good results--it was really effective for me.

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Kwan:
Based on our own experiences dealing exclusively with NET's:
There may be cases in which neither octreotide nor lanreotide are effective for on - going treatment e.g. tumor growth is not suppressed when using these therapies. In cases such as this, PRRT maybe be the best choice - certainly the patient's medical team & recommendations from a tumor board are important to receive and to define the best therapy path going forward.
Mark

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Markmark007, I have not been part of this particular conversation, but just now read your comments about expectations for PRRT. I agree with everything you said and confirm that has been my experience. I completed 4 rounds of PRRT (3 were done with half dosage due to some unusual side effects) at Mayo in October 2021. I have had two scans since with the results being “stabilization of disease”. I have another Gallium 68 scheduled in January. In the meantime, I continue to get my Sandostatin LAR injections every 28 days which I will have been on since April 2018. I have some ups and downs, but I basically just go on with my life.
When diagnosed in March 2018, I told my oncologist that I had decided to view this as being similar to a chronic illness you manage. He totally agreed.
The best to you all.

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