Sandostatin LAR

USER REVIEWS

Comment from: Eric 75 or over Female 10 years or more Patient Published: April 24

I have been using this drug since 2004 and taking it every 28 days with no problems. I started off with 5 spots in my liver and they have been shrinking with only 3 spots left. I would like to thank the drug company who also contacts me once a month to check on me. Also all of the nurses who come every month to inject me. thanks again and keep up the good job.

Related Reading: liver

Comment from: 65-74 Female 5 to less than 10 years Patient Published: December 05

I have been taking Sandostatin since 2010. While taking this injection, I had a tumor to shrink to a point that it could be surgically removed. I am still taking the injection for 3 years since my last surgery. I am very pleased with the results

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Comment from: Beeps 55-64 Female 2 to less than 5 years Patient Published: May 17

I've been on 30 / LAR for more than 2 yrs. for neuroendocrine pan/can w/ liver mets. I've had a 5% reduction in tumor size and no new growth. I've tolerated treatment well, however, in the last few months I've been e peri ending joint and muscle pain that is significant. Getting up from being seated takes at least 20+ steps before the hurt subsides. I've got muscle knots, about the size of a date, on the lower part of my back above each hip, sometimes I just ache, sometimes I've got inner hip pain that is like a knife cutting in and it takes my breath away it's so sharp, sudden, and random... Again- this has only been for a few months, since then they've done bone scans, CT, Octreoscan, e rays, etc... No new tumors... Thank goodness! Just arthritus symptoms that I did not have even 6 mos. ago? I still believe it is best to stay on the Sando... Thank goodness for pain killers!

Related Reading: liver | treatment | muscle pain

Comment from: susanrollins821 55-64 Female 1 to less than 2 years Patient Published: November 20

Ive been on monthly dosages of Sandistatin for 14 months now after NET tumor of the pancreas with metastasis to the liver was diagnosed last summer. I've had no side effects and my blood work shows lowered chromogranin levels to my oncologists delight. Sure the injection is painful but it's a small price to pay for being able to live a basically normal life at age 60.

Related Reading: liver

Comment from: SueK 55-64 Female 2 to less than 5 years Patient Published: January 04

I get 30 mg. IM injection every 4 weeks. Has not slowed down growth of carcinoid tumors on liver after 2 yrs. and had to have SIRT procedures to eradicate tumors from liver. Oncologist said I should still continue to take injections.

Related Reading: liver

Comment from: Ange 45-54 Female 10 years or more Patient Published: May 13

Ange age 47yrs young 2012 - Have been on 4wkly trtmnts of Sandostatin LAR - 20mg since 2000 - slow release octreotide has helped minimise the effects of the cancer and impact it has on my overall health.. flushing and toileting. I am fully aware of the side effects associated with any medication used has risks. I personally have not hesitated to continue with this ongoing treatment.. aches pains rashes hair loss mass weight loss/gain all part and parcel of managing the symptoms as they arise.. Getting on with it loving life to the fullest.. :)

Related Reading: sandostatin lar | cancer | treatment

Comment from: GiuJ 45-54 Male 6 months to less than 1 year Patient Published: March 03

I started on the Sandostatin LAR injections about October 2010 after surgery removal of carcinoid tumor in June 2010. Overall the injection at 30mg have returned me to normal bowel movements and less flushing episodes.

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Comment from: santaana27 Female 2 to less than 5 years Caregiver Published: December 22

i took this drug a part of combination with other drugs in clinical trials. For those that use this as a tumor inhibitor, as noted in the documents and Sando web site, it is NOT A TUMOR INHIBITIOR, and not indicated as such by the FDA. (they recently pleaded guilty for incorrect indication with the FDA with Sando being one of the drugs! Carcinoid diesase is very variable cancer and may grow for a while, then stop, on it own! That is why ones needs to learn their index rate Ki Index to tell how aggressive their disease is growing.,... slow growing typical may give one 10 to 20 years of OS. This drug works well for syndrome,very well, but it has not demonstrated anti-tumor activity, and comes at a tremendous cost per injection. If it did, Norvatis would have studied this to death and shown the results to the fDA for indication change! For those that day "it worked for me", well one study showed a "placebo" caused partial response to one participant, while one responder to the sando arm! If you still want to take it, I would wait until later in the disease course, and then make sure you image (CT Oscan) yourself. If your disease progresses, my reco is DO NOT INCREASE the doseage and continue on LAR and think you will stop tumor growth!( as some have done!) Look for other options instead (I understand, there is little to none in this space..hence the use of LAR as chemo!).... Good luck all

Related Reading: cancer

Comment from: YAM 75 or over Male 6 months to less than 1 year Patient Published: November 22

I have confirmed case of acromegaly. Been taking Sandostatin Lar for 8 mths. Suffered diarhea:avoided lactose which corrected the problem. Surprised since a recent studdy found that only 0,15% of males had the same reaction. Am now on 30mg/mth with no side effects. I will soon find out if objectives were met. I am 76 and it is a toss-up between surgery to remove the adnome or medical treatment. If GH and IGF-1 meet objectives I may well remain on Sandostatin Lar. I passed 2 kidney stones 7 mths after tje first treatment, however I do not know if there is is causal effect. YAM

Related Reading: sandostatin lar | treatment | sandostatin

Comment from: 45-54 Female 2 to less than 5 years Patient Published: September 15

Have acromagly, post surgery suffer headaches medication relieves pain.Allows a whole new life

Comment from: brs 45-54 Female 6 months to less than 1 year Patient Published: January 13

My oncologist started me on this drug in Oct. 09 and I have been taking monthly injections. My blood work(CgA) is looking much better and my symptoms (painful stomach cramps) are much better. I have noticed my hair is not growing as much. Don't know if this is related. I am happy with this medication.

Comment from: Jay 35-44 Male 6 months to less than 1 year Patient Published: December 08

I receive Sandostatin LAR in relation to treatment of insulinoma. It has been VERY effective in keeping my symptoms in check!!!

Related Reading: sandostatin lar | treatment

Comment from: kackle 45-54 Female 6 months to less than 1 year Patient Published: November 23

I've been getting injections every 4 weeks since 05/09. The first month I didn't see much change, but now my symptoms occur only occasionally. However, within the last 3-4 weeks, I have experienced sore muscles and unexplained weight loss. I have changed diet or exercise, but lost 3# in one week and a total of 5# in the last month. I meet with my oncologist in a couple of weeks and will see what he thinks. Other than that, the drug has helped me lead a more normal life.

Comment from: cpu_princess 45-54 Female 2 to less than 5 years Patient Published: October 21

I started on Sandostatin LAR 8/2006 30mg. I had break thru symptoms anywhere between 3-10 each month. I controlled break thru days giving myself octreotide shots every 6-8 hours. In order to improve my break thru my dose was increased to one 20mg shot and one 30mg every 28 days given at the same time. That is when I believe all my problems started. Hair loss, numbness in both hands and feet, cramps in calves of my legs, my body is sore everywhere. Like the previous review I too hurt when poked! Round red spot rash that comes and goes, sweating, shakiness, severe swelling in legs, feet, face and hands, fast heartbeat,arthritis, enlarged abdomin and depletion of viamins in my body. I eat very healthy and organic but still have to take perscription vitamin B-12 (I give myself 1ml shot every 7 days, folic acid, and iron pills. Also taking 5000 iu of vitamin D. Last blood test shows very low Vitamin D count and while most people only take 1ml of Vitamin B-12 per month I am on the low side of normal taking it weekly. I am convinced all this is caused from the Sandostatin. Is there anything else to try. I feel like I am fighting a war with my body to stay alive every day and slowly I am loosing the battle. JR

Related Reading: sandostatin lar | hair loss | arthritis

Comment from: Joebo93 45-54 Female 2 to less than 5 years Patient Published: May 26

At first I had no side effects, my tumors in my liver with the help of therasheres help shrink them or kept them stable for 2and a half years. But now my blood suger is high, I need to take metformin for that, my blood pressure is high and I have trouble keeping that in check, and I have muscle tenderness everywhere. If I someone pokes me it really hurts. Ive been told could be a side effect of sando or fibromialga, which I never had before. Very confused.

Related Reading: liver

Comment from: verannie 45-54 Female 5 to less than 10 years Patient Published: January 25

I am being treated for multi focal-carcinoid in the lining of my stomach. I have been taking Sandostatin lar for about 7{seven} years. My gastrin level is way down and staying there. I probably wouldn't be here today without it. My starting gastrin level was 3,600, now it is in the 400 range and holding. I worry sometimes about the long-term effect of taking this drug. I don't think anyone really knows for sure.

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Comment from: looking good 65-74 Male 5 to less than 10 years Patient Published: October 08

dose. started treatment in november, 2001. continued treatment at every four-week interval since using 40-mg. my liver has many tumors that have been stabilized according to my doctor at m. d. anderson clinic in houston, texas. i have nothing but praise for this medicine.

Related Reading: treatment | liver

Comment from: loki525 45-54 Male 6 months to less than 1 year Patient Published: November 13

In January of 2007 I was diagnosed with a 1 cm macroadenoma of my pituitary gland and started on Sandostatin LAR. I'm now getting 30 mg monthly. It has shrunken my tumor to about half of it's original size, my growth hormone level is normal and IGF is still abnormal. I guess it's working but I have developed a number of almost disabling side effects. Joint pain, back pain, lack of energy, fatigue, sleepiness, crushing depression, an abnormal gait and numbness and tingling in my hands and feet. It is now a struggle for me to get out of a chair. I don't know what I'll do if I have to continue on this drug after my surgery. It's been hell.

Related Reading: sandostatin lar | fatigue | depression

References

Medical Editor: John P. Cunha, DO, FACOEP

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