TCh vs. ACTh

MaryAnn, I am going to get tested too but I started my supplements yesterday after I finally found the right product for me at Wholefoods. It is a liquid form (I tried the horse pills a while back and they hurt my stomach especially since I like to take calcium before bedtime as it makes me sleepy)...here's what I found. It comes in a bottle to be refrigerated after opening--the brand is Bluebonnet--Liquid Calcium Magnesium Citrate. I mix 1 tablespoon with water and take it twice a day. This gives 800 iu of d3 and 1200 mg of calcium and 600 mg of Magnesium. I must say other than coping with a lot of increased bowel movements this morning (hope my body adjusts and this becomes more manageable) I feel MUCH better. I am thinking my body was craving this. I slept better last night than I have in ages. And the pains in my breasts were notably absent. I have been having breast pains since just before diagnosis and continuing into chemos. So I do think there is something to this and I wish I had thought to do this sooner. To tell you the truth this is all new and even this product hasn't been available very long. All other products now on the market which combine calcium, magnesium and D3 have so little D3 so you'd have to take another D3 supplement to get the ratio right.



I just didn't want to wait to be tested before starting my supplement and what's the point in torturing myself that if only I'd done this sooner I wouldn't be in this predicament--all this is relatively new stuff coming out. With the 25 (OH)D test the values are supposed to come back between 50NMol/land 80 nmol/l but based on how I was feeling prior to supplementing and how I feel today I'd say my body was way low. Testing will help me determine whether to buy extra D3 pills to boost it even more.



Hope this helps. MaryAnn, let us know how your test comes out.



E

MaryAnn, it has made me feel a ton better and thank heavens there are a lot of options out there now with a lot of D3. Be on the lookout for D2, as I said my daughter's calcium pills had that in them. I have found that the psylium husk supplements are very helpful with the Bluebonnet product as it does tend to loosen the bowels. You will probably notice this right away. Anyway, it is controlled much better if you take it with the psylium husks. Metamucil offers this in pill form which is much easier to take as mixing the powder with water is a real pain and not fun to drink. I can't believe that they charge 12 or 13 bucks for a small bottle of 160 pills. I actually am taking 9 of these pills a day but they are small pills and not hard on the stomach if you take them 3 at a time. You will also probably notice that you sleep better that was the first thing that blew me away and I can't believe I lost sight of that and stopped taking it for so long thinking my daughter's pills that I was taking every now and then would suffice. Also, especially since we started all these drugs we are getting zero sunshine--not good, so the supplements are essential. I even read somewhere that D3 in vitro makes chemo work better. Now I don't even profess to understand that comment!

Hi Erica, thanks for all this detailed info.  I will check the label carefully when I get the product.  I'm really glad it's helping you so much.

Hi Erica ... I got my test about ten days ago.  I called for the results this past Friday and they said they weren't available yet so to call back Wed of this week.  What does your doctor want your Vit D level to be? I am anxious to know one way or the other about mine, so you can bet I'll be on the phone first thing Wednesday morning.  I am on treatment 19 of 30 rads.  Starting to get a bit red and uncomfortable but I think I'll make it through with no delays!  Take care.

Hi Erica ... I saw my oncologist today and got the results of my Vitamin D testing.  My level is 23 which she considers normal therefore she does not recommend my taking more than 400 to 800 IU's per day of Vit D supplementation.  I'm not sure I am completely satisfied with this as it seems to ignore the fact that the study considered anything below 50 as a low Vit D level.

Hi Erica, Yes, I am going to research a bit and decide how much and which product to take.  I will definitely look at the bluebonnet product.  I may have to go to my primary care physician to get retested as I am getting the feeling that, since active chemo is over, my oncologist does not want to be managing vitamin/mineral deficiencies.  My phosphorus was low at one time while on chemo, then magnesium low, then calcium low and my onc gave me supplements to bring them back in line.  But now that chemo is over, she does not even want to retest them.  The onc nurse practitioner told me to have my primary care physician retest if I wanted to know what my current levels are!  Oh well, right now I am more occupied with the rads discomfort.  I am right on the verge of blistering but I have 4 more regular treatments followed by four boosts.  I'm hoping to make it through with just redness but it's touch and go.  Take care!  We are almost done! 

Hi Erica and Cathy, I have 8 rad treatments left, 5 of which are boosts.  I think I am going to make it through without my skin blistering or being "compromised" as they say (which the technician told me means the skin breaking down and peeling.)  I definitely have more redness than Cathy ... my entire breast is red and a large area under my arm.  My worst problem is that I developed a mild case of breast lymphedema right before rads and it is being aggravated by the radiation and therefore is no longer a mild case!  My surgeon, oncologist and radiation oncologist all say it will clear up in time.  But I am nervous about it, because from what I read, it is not at all certain that it will clear up.  So I don't know what to believe.  Anyway, we're almost there!!

Mary Ann, sorry about your lymphedema. I don't blame you for being nervous. This whole process has made me nervous but I took a turn for the worse after my blood transfusion. There are just so many risks that we must face. I'm glad you are almost finished. I see the breast surgeon and the rad oncol next week.



Cathy, what is the sleeve all about? Maybe I should ask about this? I will ask next week if I need a specialist to advise me.



Take care,

E

Just bopping in here for a moment to let you know where you can find accurate lymphedema information. The National Lymphedema Network web site is located here: www.lymphnet.org. On their home page you'll find a Position Paper on Air Travel that explains about the compression sleeve and glove and gives other tips for traveling. You might want to check out their other Position Papers too, especially the ones on Risk Reduction and Exercise.

Cathy, as someone who developed hand lymphedema while flying with only a compression sleeve on, I wanted to suggest that when you use your sleeve you ALWAYS wear the glove also. (No fun getting where you're going with a fat hand and no lymphedema therapist close by!) Also, the compression sleeve is also a great idea when you're exercising or doing any unusual or strenuous activity. (Have you checked to see if your insurance will cover your compression garments with a prescription from your doctor? Many will.)

Okay, I'll bug out again!

Be well,

Binney 

Binney, thanks for your help no need to bug out, we appreciate you being here and any advice you can give us. I will keep all this in mind as I continue my "journey"...



MaryAnn, they are probably just looking at things from a statistical standpoint and you are more than a statistic. We have to be our own advocates. Same with the vitamins too. You'd think they'd have tested for these things a long time ago and just do it as standard protocol. That's is what is so scarey. It seems like there are so many details just left up to us to pursue rather than being standard safegaurds or protocol. The patient has to be very active in learning about ALL this stuff and it does get to be overwhelming. But that said, I know people in my practice look at me and my friend surprised when they found out we advocated for TCH and they said they were not given a choice. Actually we weren't either we just took it on ourselves to research it and then we asked for it and received it. So the bottom line is there is an awful lot of help available that you will never receive unless you ask for it. It does put a lot of the responsibility on ourselves and oft times I'm not comfortable with the scope of this responsibility...at least I have a real awareness of the problem though rather than just sitting back and thinking everyone is going to take care of me...I got a little of that sermon given my personality but I know that is NOT the approach to take.



Have a great weekend ladies...let's try to relax (hah!)...



E

Hi Erica and Cathy ... how are you both doing?  I have only three boosts left and I'm done with rads.  Things have stayed about the same as far as SEs ... no worse but still swollen and sore due to lymphedema.  Hope all is going well for the two of you!

Just to be clear, the lymphedema is near my breast incision and does not affect my arm.  

E 

MaryAnn, I will be in the same boat as you.  I just got my bout of breast lymphedema several weeks ago.  I didn't even know it was there until the breast surgeon mentioned some pinkness and then the rad oncol noticed too...I have an appointment with a PT that is certified in lymphedema next Monday then the Monday after that my first treatment.  I will be very interested in comparing notes with how we progress and sharing stories.  I have been sleeping a lot more and have been tired lately and I'm thinking this is due to the worrry factor.  How swollen did you get?  So far I just have the pinkness and sometimes it looks a little bruised.  If I massage it it seems to temporarily disappear.  I know I should have a better fitting bra.  I have heard compression is good but I don't like sleeping this way and taping will be out of the question once rads start (I don't know if they consider taping the breast)...  I'm sure the PT folks will know more and I will share any advice I get.  Glad you are finished and now can take time to recuperate...

E