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Tuesday, October 17, 2017

Chemo drug rituxan for Graves





Isn't it ironic ? 

I had a double mastectomy with reconstruction..  That alone was very challenging .  I caught both breast cancers early enough so that I didn't need chemotherapeutic therapy . Three surgeries just on my implants.   I've had to have them removed twice. Once was because they found silicone artifacts in my chest. They took the silicone implants out. I opted for Saline implants but they looked awful.  If you're going to have reconstruction I do NOT suggest Saline . They have ripples and folds in them and generally very cosmetically unappealing. Two months ago I decided to take the saline implants out, to put the new silicone implants in. The shape has changed from round to a teardrop and they are texturized and adhere to the skin. They are a safer and better quality. With having graves disease it is always a challenge and this was no exception .  I still have three more procedures left. 

Two of them are to construct the nipple area and I will be having a tattoo for the areoles.  The one I'm really looking forward to is having Liposuction basically removing stomach tissue and placing it on top of the implants which gives my breasts a more natural look .  Yes, liposuction to move fat from abdomen sounds great?

Here lies the rub. My Graves specialist wants me to try a chemo drug called Rituxan.  How ironic I was able to avoid chemotherapy because I found my tumors at such an early stage. Now I'm faced with the possibility of chemo to help me feel better, Graves affects the autoimmune system and if you have read my entries you know I have a severe case of Graves. The pretibial myexedema is painful and has no cure. There are some good days but now it's spreading to my feet. The biopsy behind my right leg on one of the areas showed positive for myexedema. And now the question is can I handle chemo possibly losing all my hair so that my symptoms get better. 
This is a very difficult time for me. Stress just exacerbates it and I am under severe stress presently after losing my Mother two weeks ago. I'm feeling really low because I can't afford to move and I need to get away from so many stairs.  My dad left me a nice house but in my mind I thought I really want to be with family. So I moved.

First I moved back to NY, lost 10k on short sale then 25k.  Then it was Washington state where my daughter and sister's
 family lived And GA.  A
I have lost over $100,000 trying very hard to fulfill my father's dream of uniting my siblings and I moved from WA to GA at my brother's request.  Once I got there I was met with a very angry brother telling me that I did not deserve having a house. I couldn't believe it. It was a trick to keep me from having what my father originally gave me.  My aunt did that to me in New York in a delapidated condo that was so terrible that I would never consider living there. It was so outdated the water heater was leaking, heat pump blowing Blacksmoke and 1970s kitchen the bathroom have a washer that also dries. It was awful and she signed papers saying that I would lose my deposit of $25,000.  .
 Now I'm saying no more. I don't know how I'm going to survive but I will find a way. My father left me a ship and my brother and sister have not replied to me about obtaining it.  and there are two items that my mother signed, backs of that I gave them and once again no one will answer me. My brother and sister didn't even call me to tell me about the funeral. My PTSD is in overdrive.  I really am an emotional roller coaster ride. I'm sad and cry a lot.  I am the only family that was left out of the will.  I just want to be able to move for the last time far far away.

The bottom line is that I am all alone in this world. And that's not a nice feeling even If you are well . 
                                                 

Sunday, September 17, 2017

A Graves Disease letter

A Letter: To Family and Friends

Of Those That Suffer with

 Graves Disease

Dear Family, Thyroid diseases of any kind have a 
profound effect on the body.  Most notably Graves
 Disease One of the aspects most noticeable to
 others is its effects on the brain and emotions. Graves’ 
Disease can turn even a mild-mannered, loving spouse
 into someone who is at best often irritable, angry, 
emotionally unavailable or self-absorbed. Graves’ 
patients don’t necessarily understand that their
 feelings originate in out-of-whack brain chemistry
 and sometimes blame others for their difficult
 emotions. These factors contribute to the high 
divorce rate for people with Graves’ Disease.
 Sometimes the patient leaves the marriage, 
believing the spouse is responsible for everything
 that’s wrong, and other times the spouse can’t
 take the abusive behavior or lack of normal marital
 relations, and ends the relationship, not understanding
 that the problems are a manifestation of an illness.

It is quite impossible for someone who has never
 experienced the attack of Graves’ Disease on the
 body and brain to understand how difficult it can
 be simply trying to function or get through each  

day. Graves’ Disease is the emotional equivalent
 of an earthquake, a tornado, and World War III. 
When the disease is stabilized, many people 
experience a form of Post-Traumatic Stress Disorder. 
Relationships are damaged, sometimes permanently, 
and careers are destroyed. People tend to view the
 erratic behavior of the Graves’ patient as part of their
 personality, or in terms of character defects. Many
 people with Graves’ have had it a long time before
 it was diagnosed, and a lot of damage may have
 been done already without anyone having a clue 
that an illness is responsible.
To complicate matters, “thyroid problems” are 

viewed as minor by the general public, since for a 
time before sensitive tests became available, anyone 
who was a little fat and tired may have been told it 
was a thyroid condition. Many people mistakenly 
believe that hyperthyroidism is a free ticket to weight 
loss, not knowing that it’s a dangerous illness.
 True thyroid. Problems are serious and can be fatal
 When untreated . 
 When treated, the journey to wellness is not
  Necessarilyfast or smooth. Since every cell and organ
 in the body is negatively affected, symptoms develop 
ranging from extreme fatigue and sleeping and digestive 
disturbances to nerve, joint, and muscle problems, as 
well as hair loss and fingernail breakage, not to mention the menstrual cycle, fertility, and sexual function. Miscarriage
 is the heartbreaking result for many pregnant women. 
While the body will usually heal in time with proper 
treatment, permanent heart damage and osteoporosis 
can occur.
Anxiety and depression are common, and because of the
 myriad of unexplained physical symptoms, the patient 
focuses on health issues. Friends and family usually hav
 no idea what’s involved or why the patient is behaving the 
way he/she is, or how to deal with it. The result is that the 
thyroid patient may be treated as a hypochondriac or as emotionally “weak”, and berated by others or left alone to 
deal with life at a time when support from others is needed
 most of all. The final whammy is when the spouse, one 
who has promised to love, honor, and cherish for better 
or worse etc. can’t understand or be supportive either.
But there can’t possibly be a more difficult task than giving 
support to a spouse who isn’t necessarily sick in bed,

 Or doesn't look pparticularly ill, but very likely has stopped functioning in many areas of the marriage often includinhousehold duties, parenting, social activities, and most likely
 the bedroom as well. On top of that, how do you support someone who seems irritable or angry much of the time 
and might not even have any of the positive qualities left that attracted you in the first place?
It’s not going to be easy, nor will the return to good health 
be fast. You may already be tired of hearing the word “Thyroid

id”, but if you’re not, you probably will be. It can take 6 months
 to several years, depending on treatment method and individual response, for thyroid levels to be stabilized and for the healing process to begin, and it could be many years before full recovery takes place. It’s common for some psychological and cognitive effects to remain for many years.
A few suggestions are that you learn everything you can about
 this disease, and recognize that your partner has a very serious condition and is not able to be the kind of spouse you need right now, perhaps even less than with most other serious illnesses, because of the psychological inward war to deal with as well as physical illness. This may be the greatest challenge your marriage ever faces, and if you survive this, you should be able to get through anything together. She/he may not understand right now that it’s just as difficult for you right now as for him/her, but someday he/she will, and will love and honor you even more for standing by him/her through this.
It’s important to take care of yourself too. Spend some time with safe people who can meet some of your needs for stability and friendship that may not be met in your marriage at this
 time. Talk to other spouses who are going through the same

 thing if you can. Talk to your spouse about your feelings and develop a mutually agreeable way for you to protect yourself when his/her inner state boils over and threatens to affect you negatively. For some people it helps to get out of the house for awhile when necessary. She/he can work on trying to recognize when the bad spells are coming on and give you warning so you can protect yourself while he/she deals with it, but it’s not always possible. I could tell you not to take it personally, but that would be trivializing what could be more personal! It may take some time for you 
to completely forgive and trust again. Try to remember that this is temporary, and that it’s an illness beyond his/her control.















Monday, July 17, 2017

Sailing Through the Storm ~New Breast cancer Medication

July 17, 2017 -- The U.S. Food and Drug Administration today approved Nerlynx (neratinib) for the extended adjuvant treatment of early-stage, HER2-positive breast cancer. For patients with this type of cancer, Nerlynx is the first extended adjuvant therapy, a form of therapy that is taken after an initial treatment to further lower the risk of the cancer coming back. Nerlynx is indicated for adult patients who have been previously treated with a regimen that includes the drug trastuzumab.
“HER2-positive breast cancers are aggressive tumors and can spread to other parts of the body, making adjuvant therapy an important part of the treatment plan,” said Richard Pazdur, M.D., director of the FDA’s Oncology Center of Excellence and acting director of the Office of Hematology and Oncology Products in the FDA’s Center for Drug Evaluation and Research. “Now, these patients have an option after initial treatment that may help keep the cancer from coming back.”
Breast cancer is the most common form of cancer in the United States. The National Cancer Institute (NCI) estimates approximately 252,710 women will be diagnosed with breast cancer this year, and 40,610 will die of the disease. According to the NCI, approximately 15 percent of patients with breast cancer have tumors that are HER2-positive.
Nerlynx is a kinase inhibitor that works by blocking several enzymes that promote cell growth.
The safety and efficacy of Nerlynx were studied in a randomized trial of 2,840 patients with early-stage, HER2-positive breast cancer who completed treatment with trastuzumab within the previous two years. The study measured the amount of time after the start of the trial that it took for the cancer to come back or for death to occur from any cause (invasive, disease-free survival). After two years, 94.2 percent of patients treated with Nerlynx had not experienced cancer recurrence or death compared with 91.9 percent of patients receiving placebo.
Common side effects of Nerlynx include diarrhea, nausea, abdominal pain, fatigue, vomiting, rash, swollen and sore mouth (stomatitis), decreased appetite, muscle spasms, indigestion (dyspepsia), liver damage (AST or ALT enzyme increase), nail disorder, dry skin, abdominal swelling (distention), weight loss and urinary tract infection.
Patients should be given loperamide for the first 56 days of treatment with Nerlynx and as needed thereafter to help manage diarrhea. Additional antidiarrheals, fluids and electrolytes should also be given as clinically indicated to help manage diarrhea. Patients who experience severe side effects, including diarrhea or liver damage (hepatoxicity), should stop taking Nerlynx. Women who are pregnant or breastfeeding should not take Nerlynx because it may cause harm to a developing fetus or a newborn baby.
The FDA granted the approval of Nerlynx to Puma Biotechnology Inc.

Wednesday, February 15, 2017

Thyroid Hug




UPDATE : My ocular specialist has finally told me that I'm ready for eye decompression surgery.  
  I thank God every day for Dr. Thomas Joly.  He has patients that come from all over the world to see him. And I was blessed to finally find him after five eye doctors .   I knew there was something wrong with my eyes but I kept getting the brushoff saying I have dry eyes. I would go blind in the middle of the night sometimes. I've been through two years of steroid infusions. It is a temporary fix until my eyes stabilized . In October I will be having the surgery for decompression. I pray this will be the last of my eye surgeries.  With this type of surgery there's always a possibility that I could be cross eyed .  If that happens and I pray it doesn't, than I will have to have another surgery. Don't ever give up. I didn't.