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Sat, Mar 30 7:21am · Primary Sclerosing Cholangitis (PSC) in Transplants

Hi Colleen. My daughter has started taking infusions of entyvio. She has been having stomach aches which are especially noticeable in the night. She stopped taking the ursodiol and has had some relief. She had her first infusion this past Wednesday. She sees her Dr on Monday, so hopefully they can get to the issue of the constant stomach ache. On your sight, I think I saw something about communicating with Mayo doctors. We live in NJ, so being that her PSC diagnosis is relatively new and in it's early stages, I do not think the doctors out there would consider her sick enough to see in person. Her doctor is not a specialist in the illness, but is far better than the specialist she was seeing who could not seem to get approval from her insurance company for the tests needed for diagnosis and the new doctor has been able to with no problem…what the heck? He wants to continue as her doctor and is very willing to communicate with the doctors at Mayo about her. Is this possible and if so, how is it done?

Thu, Mar 28 6:20pm · Does entyvio cause hair loss? in Digestive Health

My daughter has started infusions of entyvio for Crohn’s and has read that people experience hair loss even though it is not listed as a contraindication. There is no mention if it is total hair loss or hair thinning and if hair will regrow when the infusions stop. Has anyone experienced this?

Wed, Mar 6 3:09pm · Anastrozole and side effects...hair loss/thinning and hair regrowth in Breast Cancer

As I said, I only dabbed it on my upper hairline by face and where my hair parts. I really would like to try putting it on all over and maybe covering it and letting it sit overnight, but that would be when disaster happens and I would have to quick run out and my hair would be all greased up!!!! That would be an experience!!! I figured I would try it and so have been noticing new growth and if it is the castor oil…yay, it worked for me, and if it is getting used to the anastrozole, then there is hope for others with the thinning hair problem. Good luck.

Wed, Mar 6 10:50am · Anastrozole and side effects...hair loss/thinning and hair regrowth in Breast Cancer

I started taking anastrozole in May 2018. The worst side effect I had was hot flashes, but I was undergoing radiation and it was a particularly hot summer here. My Dr took me off it for two weeks and I restarted it in September. I have had very few problems. The first time I had BC, I took tamoxifen and I think that bothered me more. I was anticipating problems this time. The hot flashes are gone…I never had them before in my life! I have random aches and pains. One joint in my foot seems to be tender, but it is something I can easily live with. One thing I did notice was the hair thinning. I had it with the tamoxifen and now with this. It really bothered me, but has anyone else had their hair start to grow back? I had searched the internet for a natural substance to help hair growth and found castor oil. Needless to say, I was skeptical. I put it on a cotton ball and dab it lightly on the areas by my temples and my natural hair part and my hairline by my forehead. It is an easy fix if it is a fix. Recently I have noticed new hair growth in the temple areas and in my hair part. It is about an inch + long. It is not as if my hair has suddenly thickened up a lot, but there is a difference. I am not sure if I am just getting used to the medicine or if the castor oil has any effect, but there is a difference. For me, there is an improvement, so I just wanted to let you know that there may be hope for improvement for other people.

Wed, Feb 20 4:00pm · How long was your radiation therapy? in Breast Cancer

My radiation oncologist said the same thing. I must say that I was glad but apprehensive as well. The first time I did radiation…35 days, I hyperventilated getting to exit sign on the last day…I had had enough and was afraid I would pass out and they would drag me back into the building. This time was much easier except I had psychological issues going on because the radiologist that did 2 MRIs on me 6 months apart gave me benign diagnoses and I believe that my cancer would not have been invasive if he had done his job right. What is UIHC? I’m glad someone is on the same page as myself. I didn’t have a problem tolerating the radiation either time, but this las time has affected the skin somewhat….it feels harder. Thanks @marykaym63.

Wed, Feb 20 1:13pm · How long was your radiation therapy? in Breast Cancer

The first time I had breast cancer, back in 2007, I did radiation treatments for 35 days. I have noticed that many people on this site say they have or are doing 30+ days of radiation. This past summer I did radiation again, but only for 21 days. Now I am wondering why mine was so short. I ended up leaving my oncologist this time. He did things that aggravated me…like having his own agenda and not wanting to listen to me or answer my questions. It bothers me that he never suggested proton therapy instead of radiation…I would have liked to have known if it was an option. I feel that I should have been made aware of it. I am interested in knowing if many of you have had the accelerated radiation treatment like I did.

Wed, Feb 20 1:02pm · Arimidex in Breast Cancer

I had DCIS, stage 0, 11 years ago and did 35 days of radiation and took tamoxifen for 5 years. Last April, I found I had invasive ductal carcinoma, stage 1A.. I had lumpectomies for both. This time I did only 21 days of radiation and am now on anastrozole (Arimidex). I was also wondering what anastrozole would be like as I have heard so many stories. For me, it is nothing. I have had very minor things like hot flashes…but then it was a very hot summer and I was doing radiation. I have not had one since. I have always had aches and pains to some degree so I really do not think it is a problem for me. If I do have an achy day, I just think to myself that it is a sign that the medicine is working. Also, my cousin who has had breast cancer twice had a lumpectomy for the first one and no radiation or hormone meds. She got BC again in 3 years and just opted to have a double mastectomy also with no radiation or hormones. Now she wonders if she should have done either or both of the other therapies. I think there is no right answer to this. What works for one may not work for another. I opted to take the anastrozole because I did not to kick myself in the future for not doing everything I could for myself.

Wed, Feb 20 12:47pm · Primary Sclerosing Cholangitis (PSC) in Transplants

This is fairly new, so she has not had time to do much but go for tests and Dr’s appointments. She has an attorney, but has not been able to get in touch with him. He can guide her about who to see for disability and maybe give her some additional advice. She has no health team yet. She just has her GP who noticed the stuff with the liver enzymes and the gastroenterologist that she ended up with in the ER. She had seen her former gastroenterologist who was taking his time getting tests for her. The new Dr has gotten her a number of tests to diagnose the PSC and he is also treating her for her Crohn’s. I am liking how well he treats her and is working for/with her. We are new to this, so just finding our way. Getting away from the husband is a problem as he carries the health insurance and has told her if she leaves he will just quit his job….he really loves her, right? She does pretty well standing up for herself, but she sure does not need the stress and confusion. I have been single for 27 years and truly like my life and I think she would too, if she ever gets the opportunity.