Checking in…

It’s been a while…  I thought I should check-in.  Just not much going on in my world these days.  I guess that is a good thing.  Other than being exceptionally tired all the time, I’m doing well.  I’m not sure what this fatigue is all about.  I was keeping track of how I felt “before” and “after” my Sandostatin shot.  I’ve come to the conclusion that it makes no difference at all in how I feel.  No worse, no better. I go in next week for my Sandostatin shot.  Depending on which nurse I get, I’ll report my fatigue.  I say it “depends” because really only one of them asks me, and seems to keep track, of how I am feeling.  She follows-up on anything I’ve reported previously.  Like my hot flashes, pain, etc.  She asks about any Carcinoid Syndrome symptoms (diarrhea, flushing) that I am having, if any.  I wish I had her every month but alas, it’s just not gonna happen! They are all nice — she just seems to have better follow-up.

I have an appointment with a new OB-GYN next month.  I haven’t been since last April, before my insurance switched.  I hope I like her.  My last CT scan did show something, most likely a fibroid, in or around my right ovary.  She’s located at the hospital where I had my scan and mammogram so she should be able to pull up those reports. I still have the two “lumps.”  They don’t seem any bigger though (or smaller).

We had an interesting support group meeting last week.  Representatives from Ipsen came to talk about Lanreotide, (Somatuline Depot Injection). Approved in December for the treatment of patients with unresectable, well or moderately differentiated, locally advanced or metastatic gastroenteropancreatic neuroendocrine tumors (GEP-NETs) to improve progression-free survival. Lanreotide was previously approved for the long-term treatment of acromegalic patients who have had an inadequate response to surgery and/or radiotherapy, or for whom surgery and/or radiotherapy is not an option.

One big difference is Lanreotide is a subcutaneous injection and Sandostatin LAR is intramuscular (and trust me, it’s a BIG needle). I’ve heard that Lanreotide is like rubber cement though and takes a while to inject.

We also have a couple of newer members that drive me nuts.  I feel bad saying so but they do.  One is a patient and the other is a caregiver.  I won’t go into details but let’s say it makes me not even want to go.  I go because of a couple of other people that I really, really like.  Our little “group” is not so little anymore.  I’m sure all support groups have a few members who are annoying!

So much for my short update.


3 thoughts on “Checking in…

  1. ronnyallan says:

    are you taking Vit B and Vit D supplments Sharon? I’ve been taking a Vitamin B Complex (all the main ones) plus a Vitamin D3 (this is the main one needed) and whilst it took quite a few months, I do think it made a difference. Good sleep and some exercise is also helpful – sometimes this is difficult but I try! LoL on the last paragraph!

  2. SharLar6074 says:

    Ronny, I actually do take vit D3 and last week I gave myself a shot of B-12 to no affect at all! My sister has pernicious anemia and has to give herself shots so she gave me one of her vials. This was the first time I’ve injected myself (I’m so proud)! She gave me two vials so I can give myself another one in another week or so. I haven’t been tested to see if my levels of either are low though!

  3. Lizbeth says:

    Hi there, great post. On the sandostatin comment. I was first on daily injections I gave myself of sando them was on sando lar 30mg every 21 days given to me by my treatment nurse. Yes it’s a big needle. I was happy I got the same nurse every time , she mixed it properly and administered it brilliantly 😀. If it can be given brilliantly, that is. I’ve now been transferred to lanreotide 120mg every 21 days. I built up an intolerance to sandostatin. Yes the lanreotide takes a long time to go in. And it does at times hurt when it is being injected. The slower it gets injected the better. Have a good day

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