Sunday, October 25, 2015

Lupron Side Effects - Health Update

What a week! Things did not go quite as planned after my injections last Wednesday afternoon. The Lupron, which was the injection to induce a chemically induced menopause like state to protect my ovaries during chemotherapy, unfortunately did not agree with my body. I found myself in the Emergency Department of my local hospital for some pretty extensive blood loss by last Sunday.

Essentially this drug was suppose to slowly transition your ovaries to a dormant state, normally the patient experiences things like hot flashes, minor cramping, and the loss of ones menstrual cycle. Side effects also include mood changes, night sweats, insomnia, diarrhea, and other typical consequences of menopause. Well, my body decided to take this transition very poorly and attempt to eject my entire uterine wall in 24 hours; you can imagine why this would be a serious problem. Neither my prescribing physician, or the ER doctors had ever heard of any patient having this effect from the drug, so they were quite surprised. They called a OBGYN who basically said it is an extremely rare side effect that happens to about .001% of patients... So of course I would get it! lol I am always that patient that receives the crazy side effects no one has ever heard of. Needless to say we will not be continuing the injection of this drug every month which will result in a 99% chance that I will become completely sterile from my Cytoxan treatment. Honestly, I am not feeling super upset about this. My husband and I have discussed the prospect of children greatly over the last many months, and also with my physicians. Pregnancy in a patient like myself would be an incredibly great risk, most likely resulting in my death, or in an innocent life riddled by birth defects. Right now pregnancy is the last things on our minds; our main goal is to have as many years together as possible. While yes, we both dearly wanted biological children, we have accepted the fact that it is not in the cards for our family. As long as it hold each other I know we will be just fine.
After the eventful weekend I was put on a high dose of the female hormone called Progesterone to counter act the side effects of the Lupron which have helped my body revert almost completely back to normal... Minus the continuing hot flashes. Hopefully the remainder of the month will continue smoothly as the rest of this drug leaves my system, unfortunately it resides in the patients body for approximately thirty days.

Thursday morning before my weekly saline infusion I saw my Primary Rheumatologist who was less than happy to hear I was unwilling to proceed next month with my scheduled dosing of Lupron. Even after everything that happened as a side effect of this drug she still believed I should attempt another injection to save my fertility. Unfortunately she is not accepting of my husbands and I opinion, or my other physicians warnings about pregnancy in a patient like myself. Honestly, she is still very frustrated with my decision to accept the Cytoxan prescription given to me by my world rewound Scleroderma Specialist from UCLA. While I understand her hesitation, truthfully, if I have a the worlds top specialist in my disease telling me to do something, why would I do the opposite? I immensely trust his judgment, and while I respect her professional opinion just as greatly, I truly believe he will lead me down the more aggressive, and victorious path. Our appointment was filled with a touch of animosity, which was a tad bit unbecoming, but something I am willing to deal with if it means I get to attack this disease head on with my UCLA specialist. She will still be my Primary Rheum, and is willing to keep an eye on me during my infusions, even transfer the infusions to her hospital if I would like, but all this was a bit spat out. At one point she even expressed that one of my other doctors would be "dissatisfied" with my decision. What she doesnt understands is that this wasn't "my" decision, it was a thoroughly thought out treatment plan by another physician that was prescribed while she wasn't even my doctor. I feel sometimes physicians forgot that it's not about "whose idea it was" or "what physicians they do or do not like," it's about giving the patient the best chance at living. Now, don't get me wrong, I know she cares exceedingly about my well being, I just don't think she grasps that this is my fight not hers... And I am ready to wage war. 

Cytoxan begins Tuesday. I will apologize now for the lack of updates that will ensue next week during my chemotherapy stupor. I have been told I will be quite physically ill for the first few days, and pretty miserable for the two weeks following. I will try to update everyone as soon as I can after next week. I also want to take this opportunity to thank everyone tremendously who assisted in the "Chemo Clean" of our small apartment. I am always so exceptionally humbled by the generosity of our family, friends, and neighbors. Your service will make an enormous difference in my health during treatment. Thank you, thank you, thank you! Please also excuse the back-up in email and comment responses. I hope to reply to everyone's well wishes and kind words soon! Hugs!

7 comments:

  1. I am so sorry about your side effect! My husband and I elected for me to have a hysterectomy for the same reasons you stated about having biological children. I had the worst time with my uterine health though. Massive bleeding, long periods, like a month or longer . They tried hormones, but my body overcame every stopper they tried. So I found an awesome obgyn surgeon who took it out and just left my ovaries, so that when I do go through menopause it won't be so vicious. I feel for ya girl. Rootin for ya. Keep us updated

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  2. Chanel, wishing you nothing but the very best. I will be thinking of you come Tuesday and beyond and sending healing vibes your way! Much respect to you for sharing your courageous journey and for the joyful way you go through life, come what may. You're an inspiration! Stay strong!

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  3. You are an amazing inspirational human!
    Now I will say Lupron is HELL. I know it works for some, that is fabulous, however not all! It was made for prostrate cancer & then later given to women for various reasons. I took it 3 times, not the prescribed 6 & had it out with my dr. It was literally the worst 3 months of my medically challenged life as 14 yrs later I still suffer the .01 of those who have problems!
    I was advised to join the lupron victims group & lawsuit - I declined though I know quite a few women who did join the lawsuit & settle.
    I had an ovary removed prior to that treatment & 8 major surgeries for endometriosis. My 9th surgery was a c-section of my miracle healthy son at 39! I had a full hysterectomy earlier this year & glad I did.
    Now I'm on a new journey with pain management drs & neurologist (that parts new!).
    You are so blessed to have a wonderful & loving husband!
    I have wonderful family, friends & my son. Sadly my marriages could not withstand the diseases my body has but hope, faith & prayers brought someone special to me when I wasn't expecting it!
    Never loose hope! Keep Hope Alive! It's my motto!
    My prayers & hugs to you!
    Kick booty girl!

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    1. You got this girl. Much love my friend :)

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    2. Hey Kim! Thank you so much girl! Your awesome comment made me feel like a million bucks! I am so ready to kick some booty ;) I am so sorry to hear that Lupron put you through the ringer as well... I seriously cannot believe it hasnt been pulled off the shelf! Urg. Hugs my friend!

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    1. Aw thank you so much Kyra! Those spoons were definitely needed ;) Hugs!

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