Starting/declining hormone therapy Nov, Dec, Jan 2018
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Hi Wised, I read about the supplement Gaba for sleep on this site. Not to be confused with gabapentin 100mg which helps with hot flashes and sleep. You have to have a prescription for that. I started taking Magnesium 400mg after dinner its supposed to relax you then Gaba 500mg (NOW brand Amazon) about 30 mins before bed. It has been working for me. I hope you get some rest soon.
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April1964 -I used the Jamacain Black castor oil on my scalp after chemo to help my hair grow again. I can’t say for sure it helped, but it didn’t hurt. The downside is that I couldn’t use too much because it made my hair oily and was not washing it every day.
Another thing that helped was sleeping on a satin pillow case. I bought one at Bed Bath and Beyond for about $8.
I also washed my hair with Avalon Organics Biotin B Complex Thickening shampoo, and I still use it. I don’t love it, though. Really have to rinse thoroughly (extra thorough) to get it all out
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thanks so much kale for the information ! I think I will try to find that shampoo... I didn’t do chemo but the anastrozole has made my hair very very thin
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I am using Nioxin products to help with thinning hair. It's a little expensive but it's working very well.
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thanks wise, I’ll look into that
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Hey ladies - I just have to vent. I am so sick of hurting. My neck and throat continue to swell, ache, itch and nothing helps. I can barely turn my head to the right these days. Thankfully when I saw my Primary this week on Thursday she gave me a rx for more Prednisone just in case the Claritin wasn't enough to keep my swelling/symptoms at bay again since they had returned. I can't wait to get back on the Pred just to get some relieft. I wish I had never agreed to try Zoladex. I am so leery of any other drugs at this point. Also, I'm a bit concerned that the Claratin isn't working this time or maybe it never helped and it was always the Pred to begin with. Some many undknowns. I just want answers and am so sick of waiting for anyone to solve this. I just want my normal neck, normal pain level, and normal fatigue level back. My official appt with my new Immunologist is weeks away, 9/15/19. Seems light years away. I hope a billion people cancel and I can get in next week. End rant.
May you all be having a fantastic weekend...I want to live through you all vicariously! LOL. Enjoy! Thanks for continuing to listen to me whine and such. It's so appreciated. Many hugs to you all.
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Oh Spoonie—gentle hugs. I’m foreseeing a crappy few more weeks as this summer winds down and better times for all of us as we head into a new season of cooler temps, brilliant colors, and fresh starts.
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Poor Spoonie - you really are going through the wringer. Hopefully Ingerp is right and with cooler temperatures we will all be feeling a bit more lively. Hope you get an earlier appointment and an answer to the stupid misery that the Zoladex caused you (have you looked up its half life to see how long till it leaves your system). Rads are done for me but my boobie is on fire for a while longer and man is it having a temper tantrum. Hope you have a good day.
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Thanks ladies. I always love fall so am looking forward to it, plus this time for even more reasons - maybe the dang hot flashes will be gone after that!
May the coming coolness be wonderful for us all as well! GiddyUpGirl - I've talked to the makers of Zoladex (Astra Zeneca) and to my MO multiple times, asking about the half-life. All they will tell me is that it leaves your system "rapidly" after the final dose, which "supposedly" releases after the 28th day of implantation. However, I've found on the internet, according to the FDA that it takes at least 2 months for the depot (materials used to implant the Zoladex) to be degraded and reabsorbed into your body. I have no idea if it's the Zola or the materials ("totally biodegradable D,L-lactic and glycolic acids copolymer (13.3-14.3 mg/dose)") to make the depot implant. I'm guessing it's the Zola since I've had medical sutures that biodegrade (which are made of the same materials) and never had a reaction. Anyway, no one will give me a straight answer so I just have to wait until I no longer need the Claratin and Prednisone to manage the symptoms. Ugggh.
The one upside in all this is that when I called Astra Zeneca they were appalled at the care my MO had provided me regarding their drug. Because I had informed them (AZen) of my side effects, they actually had to open a case and report it. I was required to give them my MO's name and phone number. I'm guessing they (my MO's nurse) will not be happy with me but hey it is their responsibility (according to AZen) that the drs office MUST report all side effects such as this. I doubt they did since they denied it to my face a zillion times that this wasn't an allergic reaction. If they get in trouble for this, not my fault.
When I saw my PCP this week, to get a new RX for Pred, she also is now referring me to a specific Allergist since my MO won't help. This way we can move forward and figure out through testing if I am allergic to the Zola, and if so, am I also allergic to Lupron. Waiting for a call from them to get a intake appt scheduled. My future cancer treatments depend on this knowledge, I refuse to go through another 2 months of "just try it and see". This last attempt was a debacle. I can't understand why my MO is not on top of this or concerned. They just want nothing to do with me. Le Sigh.
I put together a PDF and sent it to my MO. Just going to share the picts here for anyone else that may come searching for help with a reaction to Zoladex. I continue to be flabberghasted that my MO and her nurse can deny this is an allergic reaction when it's so clear that antihistamines in major doses plus Prednisone resolve the symptoms and I have never ever ever ever had swelling in my neck prior to this implant. Still shaking my head.
July 18th and July 31st
(swelling was the same throughout the weeks between)
Starting Prednisone Days 1 and 2 (Aug 2-3)
4 Days Past Prednisone (continued with 3 tabs Claritin 2 times daily)
No Claritin 48 Hrs and 72 Hrs
Zoladex Description
"Zoladex® (goserelin acetate implant) is a GnRH agonist. Goserelin acetate is chemically described as an acetate salt of [D-Ser(But)6, Azgly10]. Its chemical structure is pyro-Glu-His-Trp-Ser-Tyr-D-Ser(But)-Leu-Arg-Pro-Azgly-NH2 acetate [C59H84N18O14(C2H4O2)x where x = 1 to 2.4].
Goserelin acetate is an off-white powder with a molecular weight of 1269 Daltons (free base). It is freely soluble in glacial acetic acid. It is soluble in water, 0.1M hydrochloric acid, 0.1M sodium hydroxide, dimethylformamide and dimethyl sulfoxide. Goserelin acetate is practically insoluble in acetone, chloroform and ether.
Zoladex is supplied as a sterile, biodegradable product containing goserelin acetate equivalent to 3.6 mg of goserelin. Zoladex is designed for subcutaneous injection with continuous release over a 28-day period. Goserelin acetate is dispersed in a matrix of D,L-lactic and glycolic acids copolymer (13.3-14.3 mg/dose)[PLGA] containing less than 2.5% acetic acid and up to 12% goserelin-related substances and presented as a sterile, white to cream colored 1-mm diameter cylinder, preloaded in a special single use syringe with a 16-gauge x 36 +/- 0.5 mm siliconized needle with protective needle sleeve (SafeSystem™ Syringe) in a sealed, light- and moisture-proof, aluminum foil laminate pouch containing a desiccant capsule. Studies of the D,L-lactic and glycolic acids copolymer have indicated that it is completely biodegradable and has no demonstrable antigenic potential."
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Pharmacodynamics
"In females, a similar down-regulation of the pituitary gland by chronic exposure to Zoladex leads to suppression of gonadotropin secretion, a decrease in serum estradiol to levels consistent with the postmenopausal state, and would be expected to lead to a reduction of ovarian size and function, reduction in the size of the uterus and mammary gland, as well as a regression of sex hormone-responsive tumors, if present. Serum estradiol is suppressed to levels similar to those observed in postmenopausal women within 3 weeks following initial administration; however, after suppression was attained, isolated elevations of estradiol were seen in 10% of the patients enrolled in clinical trials. Serum LH and FSH are suppressed to follicular phase levels within four weeks after initial administration of drug and are usually maintained at that range with continued use of Zoladex. In 5% or less of women treated with Zoladex, FSH and LH levels may not be suppressed to follicular phase levels on day 28 post treatment with use of a single 3.6 mg depot injection. In certain individuals, suppression of any of these hormones to such levels may not be achieved with Zoladex. Estradiol, LH and FSH levels return to pretreatment values within 12 weeks following the last implant administration in all but rare cases."
PLGA (depot ingredient of Zoladex) Info Below:
"PLGA (co-polymer material used to make the Depot for Zoladex) is one of the most common and important polymers for medical applications because of its long-term clinical use and suitable properties. Thus far, there are 11 types of commercially available PLGA produces (Summarized above in Table 1). They are formulated in different forms, including membranes (mesh), sponge, powers, gel, and suture with different LA/GA ratio.Their degradation time varies from a couple of weeks to 48 weeks. Some membranes products such as Vicryl and Resolut can remain integrity for at least 12 weeks, which meets the requirement for GTR or GBR."
"[located in Table 1] Zoladex and Lupron degradation time: 4 weeks. Zoladex: 'good biocompatability, nontoxicity in MOST tissues. Lupron: Minimal toxicity and minimal mechanical irration to the surrounding tissues.'." (my understanding is that this is the degradation time/half life for the DRUG itself, not for the ingredients that make up the depot for implantation/injection)
Also of note: PLGA is available not only in different combination percentages, but also in different "endings". Some PLGA will end in a ESTER or a Hydroxy and ACID terminated molecule form. (I'm also going to call AsZen to find out which one is what I received)
"Table 2 Approximate resorption times of commercially available lactide and glycolide homopolymers and copolymers":
"[see chart] DL-PLGA (50 : 50) 1–2 [months] "
(according to Table 3 Zoladex is a DL-PLGA polymer which comes in various percentages mix. I will call Ast Zeneca to find out which is in the One Month injection and the 3 month and update later.)
** other tags: Goserelin (generic name for Zoladex), PLA (polylactic acid), PGA (polyglycolic acid), PLGA ( Poly Lactic-co-Glycolic Acid), DL-PLGA (<-- Zoladex polymer type), co polymer, depot, , biodegradable lactide-glycolide copolymer matrix, GnRH, Gonadotropin Releasing Hormone Receptor Agonist, LHRH, Hypersensitivity, Allergic Reaction, Allergy, Half Life Zoladex **
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Spoonie, thank you for calling AstraZeneca and reporting your symptoms. That will hopefully protect some future cancer patient from going through what you have gone through. Some gentle hugs for you to feel better
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Spoonie, you’re a smart cookie. I never would have thought to call the drug manufacturer. Wised is right that it may help someone else. I’m glad that your PCP seems compassionate and on top of things. Hopefully something opens up at your new immunologist before September. Sending gentle hugs, wine and chocolate.
Add me to the list of people looking forward to cooler temps!
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Echoing the rest on how smart you were to let the drug company know. Also I seriously hope things are on the upswing. I'm glad the prednisone is helping but I know I personally feel like crap when I'm on steroids so I hope you can ditch them soon.
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Just Wow. I was following Spoonie's debacle. I hope you will get even further answers to ingredients that you should or shouldn't have so you won't have to go through this in the future. Good luck with your upcoming appt. w/the allergist.
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hello ladies! I have been at the beach and just returned home on Sunday. I do not remember the last time I checked in! It was a busy week with 4 of the grandkids,DD and SIL.
Spoonie- I thought about you so much!!! I wouldn't have the energy to keep up with the swelling like you have! I know we all have to be our own health advocate and you are setting a top notch example for us all! I dislike prednisone! Fingers crossed that it does more good than harm!!
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HELLLLLLLOOOOOO EVERYBODY!!! I am in the BEST mood!!! Know why????
Welp, I finally have answers. Super duper answers and my MO can just suck it!!!!
LOL, sorry not sorry am just relieved to finally have an answer, even though it may not be the best for my cancer treatments going forward, but it IS AN ANSWER!
According to my Allergist am I am completely and totally ALLERGIC TO ZOLADEX!
Whoooopity doooo! I thought I was going to pass out from joy walking out of that appt, I tell ya what!
My labs corroborated the allergic reaction with the elevated Eosinophils, neck swelling, rash, and response to Prednisone. He is going to run follow-up testing after I'm off of the Pred for a week. Even if they are not elevated at this time, he is quite sure I am allergic and would DEFINITELY NOT FEEL COMFORTABLE with me ever having Zoladex, and most likely any other ovarian suppression medication.
I am walking on Cloud 9 - he was just an amazingly helpful doctor and told me "You have been through alot. Just breathe. We have time and I am listening." So much compassion. I was impressed.
Anyway, that is my GRRRRREAT update for the day! I'm all smiles.
Can't wait to send his report to my Oncologist and let them choke on it. Allergies happen, maybe not to many but they DO happen to a few, and I am one of them. Shame on them for the way they handled this and I expect they will be highly embarrassed (or should) be by how the treated me over the past month and a half.
Wishing you all a happy day full of smiles - I'm going to go celebrate with some day drinking of my favorite wine and a big piece of cake!!!!!!!! Hugs to you all and thanks so much for being here for me through this all. You are all priceless and I continue to say that BCO is full of amazing wonderful caring and just lovely people and I'm so thankful I found you all.
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Spoonie77,
So glad you finally have an answer to your symptoms! You deserve that cake and wine after all you have been through.
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Spoonie! I’m so happy you got a definitive answer! And boy if I were you I’d be giving your MO a piece of my mind
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wow just wow! Great news, but why oh why are these oncologists so reluctant to believe the side effects that are experienced. So glad you have been listened to and validated and hopefully now on the road to a full recovery. I Am just sorry you had to go through so much.
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Spoonie - glad you're feeling better, mentally and physically. I have my doubts that your MO will feel any embarrassment or remorse though. Some doctors just can't believe they're ever wrong. Do you know what's next for you? Endocrinologist, perhaps?
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Very glad you have the answer and yeah, your MO should be ashamed.
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ICE CREAM ALL AROUND!!
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Spoonie - I am so glad that you finally got your answers and that the doc was so compassionate. YAY!!!!!!!! The heck with a big piece of cake just grab the whole cake and a fork and go for it. Really really happy for you (although bummer that you have an allergy).
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Spoonie, your self-advocacy and perseverance have paid off. Yay for you, for taking the lead and yay for the compassionate allergist.
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Yay, Spoonie! So glad you have answers, and that your allergist is a good addition to Team Spoonie. At least this has a (relatively) simple solution... wait until the Zoladex leaves your body and then taper off the prednisone. I’m meeting my cousin for lunch today, and I think I will have some dessert in your honor.
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Spoonie- so glad that you finally have answers! Your allergist sounds amazing and glad he took the time to listen to you
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Yay Spoonie! Now it is time to find another MO.
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Dani, how are you holding up? Do you have test results from your biopsy? Your cancer dx anniversary was yesterday so I hope you got good news. Thinking of you.
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my results are BENIGN!!!!! I am so absolutely relieved. That was honestly worse than the waiting with my initial diagnosis. She wants to do another mammogram in 6 months and US the lump as well. I really wonder if it is a thing to go back and just get a mastectomy of that side. I have regretted not pursuing that from the beginning, but I couldn’t go there at the time. I did not expect to have this level of anxiety when faced with my imaging. My BS said she wants to alternate every 6 months between MRI and mammo. That sounds exhausting. I just feel like an emotional whimp and I just said to a friend today that I am really surprised by how “not strong” I feel. If that makes sense. Thank you for thinking of me it means so much
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Dani--congrats on the news and really I think over time the anxiety will lessen. This is all still so fresh but as you get a few more checks behind you, you'll start to approach them with more of an "I'm fine--let's just get this over with" attitude.
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Great news, Dani!! I think Ingerp has a great point about anxiety lessening over time. I was nervous before my mammo in June- would it hurt on the surgery side, would they find something. Plus, I was flashing back to last year, when my cancer was diagnosed at my annual mammo. The mammo tech said the first post-surgery one is always the most stressful. See how you feel in 6 months when you have your next round of testing. A mastectomy on your other side is a big step, but only you can decide if that's right for you.
I think we'll all face emotional challenges this year. There's still days when I feel unsure of who the new “cancer patient" me is. I haven't totally figured her out yet. Today is the one year anniversary of my lumpectomy and I'm not sure if I should light a candle or celebrate. You know how there's traditional gifts for each wedding anniversary; paper for the first, silver for the 25th? Maybe we need something similar to mark each year since being diagnosed and treated. Hubby and I are going out to dinner tonight, and I'm having a cocktail AND dessert. I'm sending love and hugs to each of you. You've made this year much easier! Plus a special hug to Wised for starting this thread.
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