March 2020 Chemo
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Nooch, I specifically asked my oncologist about gardening because written information from my care team had said to use garden gloves when pruning, weeding, etc. I am a pretty serious gardener, veggies and flowers. My oncologist said soil microbes could be aerosolized into my lungs. He was adamant about no gardening. I kicked myself because I should have already thought about it. I used to do soils research. Turning over soil, weeding, planting, etc. could all cause soil particles to be aerosolized. So I wear a mask and do very simple tasks like deadheading and watering and leave the planting and weeding to my son. It is so difficult to get vegetables that I wanted to have more of them in my yard this year. If anyone else is a gardener I encourage you to talk about it with your care team.
I ordered seeds online and started my own veggies and flowers since I can’t get to a store.
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Good Morning All!
My dad has taken over grocery shopping for us, which is so sweet! My infusions are on Thursdays, so he comes by my house to pick up my son, (who is out of school right now due to all this Coronavirus mess), and they go to the grocery store together first thing in the morning, during senior citizen hour. My dad is 75, but healthy as a horse, thank God! He only gets out on Thursdays, to do his grocery shopping and mine. Since he is going to go out anyway, I figure it can't hurt if he adds my stuff to his. Plus, he WANTS to be able to help me, if he can, so this allows him to do so.
It's actually such a blessing to come home from chemo and have all my groceries bought and put away.
Our office is currently working from home, which has been nice.....especially on the days where I don't feel so hot.....but I do miss going into work. It'll be nice when this stay home order is lifted and we can go back to the office. I miss the people that I work with and honestly, it's easier to do my job there as opposed to home.
I hope that life returns to "normal" soon. I don't mind the social distancing, but it would be so nice to go out to eat, catch a movie, or walk around the mall.0 -
No worries Julie, there is one on the April chemo, i can grab the names and dates to add to the opening comment
and send them you. For groceries, i am playing hit n miss lottery with instacart deliveringPaula, i cant say the red devil sounds fun... good luck for Friday, hope its goes quick and easy and same for you Sharlyn tomorrow
Etnasgrl, hope that appetite comes back quick
and good luck too for tomorrow
Nooch, am wearing gloves for gardening too... guess i can grab a mask too for those soil turning moments
big hugs to everyone
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Jettie, Nooch40, and everyone else on Herceptin— please check to be sure you actually are getting Herceptin. If you have reaction like I did to my first infusion, you may discover like I did I wasn't given the real Herceptin but instead a bio similar.
I was told Herceptin, signed a consent form which stated Herceptin but instead was infused with Kanjinti. Chemical name Trastuzumab-anns.
Biosimilars are not the same as the original. Herceptin is a monoclonal antibody made from Chinese hamster overy proteins. Kanjinti is made from mouse proteins.
When someone like me who is allergic to different animal proteins it can make a big difference. I'm allergic to the protein in bay scallops but not to sea scallops.
Differences in protein can have big consequences in my body from being fine instead ofpassing out and respiratory failure.
Ladies find out what's being put in your body. You may be reacting to a bio similar and have zero problems with real Herceptin. Haven't researched whether heart function problems vary between the biosimilars (there are five for Herceptin) and the real stuff, but will.
PS now have a new medical oncologist.
j
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Hello!
Thank you everybody for letting me know about the gardening!! I had no idea!! I don’t think I’ll have the time or energy for one this year.Byhisgrace , that is a very upsetting experience. I work in health care and our consent has to match our procedure or we get into big trouble. I have no idea how that could have happened. The dr , and all the nurses involved check the consent. I am so sorry. How did you figure that out??? I am definitely going to check next week and make sure it’s the real herceptin. Thank you for letting us know!
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Nooch40 -/ while I was being infused I asked the chemo nurse to take a photo of the plastic bag prescription label ... just something I’ve done through the years to keep track of what I’ve been given because I have so many weirdo allergies. The cows’ milk protein I’m allergic to (casein) often is used as a binding agent in oddball things like asthma inhalers and sausage so I look closely at medication package inserts and food labels.
A couple days ago when I looked at the photo of the infusion bag I noticed the “-anns” after the trastuzamaub. I googled it and discovered it was not the real Herceptin but instead the biosimilar Kanjinti (trastuzumab-anns)
The written info the doc gave me was only about Herceptin—no mention of the biosimilars. The consent form only stated Herceptin. I specifically asked him about the Chinese hamster ovary protein versus mouse protein in Rituxin. I’m allergic to bay scallops protein but not sea scallops protein. They actually are two similar but different animals. Hamster ovary protein does not equal mouse protein in everyone’s body.
j
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Deleted the prior photo to remove my fullname and date of birth. This one is cropped.
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mine just has herceptin written on it in black marker pen, could be anything for all i know. I have mine done at my MO's office and they make them up there... 0 -
Okay.....on the Herceptin issue.
Most infusion centers use Trastuzamaub-anns, also known as Kanjinti. The reason? Because it is cheaper than Herceptin. If there is an option to receive Kanjinti or Herceptin, most insurance companies will approve Kanjinti and not Herceptin because of the cost.
Herceptin (chemical name: trastuzumab) is a monoclonal antibody, a targeted therapy medicine used to treat HER2-positive breast cancers. Herceptin is what's called a "biologic" drug. This means that it is made from living organisms — in this case, a protein from a mouse cell. A monoclonal antibody is a type of protein made in the lab that can bind to substances in the body, including cancer cells. Each monoclonal antibody is made so that it binds only to one substance. Herceptin binds to the HER2 receptor proteins in cancer cells.
Kanjinti is a biosimilar drug. A biosimilar is a new type of biologic drug that is almost identical to a biologic drug that is already approved by the FDA (or similar organizations in other countries). The chemical structure of conventional drugs can be easily identified and duplicated, which is why there are so many generic drugs on the market.
Kanjinti is, in a sense, the generic version of Herceptin. So, it's a lower priced drug that does the same thing as Herceptin. If there is something in Kanjinti that a patient is allergic to, the oncologist can notify the patient's insurance company and request that name brand Herceptin be given instead. In those cases, most times, Herceptin is then approved by the insurance company.
When signing paperwork, you will most likely notice that the drug name listed is Herceptin and not Kanjinti. Although this mostly depends on the infusion center and/or oncologist. It is lawful for them to do this. They are not trying to deceive or trick you. Since Kanjinti is a biosimilar drug, it is legal to refer to it as Herceptin.0 -
etnasgrl — with respect for your knowledge and sincere appreciation to you for sharing it, some of the information seems incorrect. The difference can be significant to those like me with severe allergies.
I’ve linked the Genentech data sheet on Herceptin and if I read it accurately, Herceptin is made from Chinese hamster ovary protein. Kanjinti is made with mouse protein.
The FDA approval process on Kanjinti and other Herceptin biosimilars was for how it is made, not how it works in a patient. The presumption is if it’s made substantially the same it should work substantially the same. That may or may not be true. Anecdotally, most people have experience with a brand name drug working differently than its genetic counterpart, in part, because of the wide array of inactive ingredients.
I don’t know the law on biosimilars, but when a pharmacy fills a prescription with a generic drug instead of a brand name, it must be disclosed. You may be totally correct, but I would be surprised if a chemotherapy pharmacist works under different rules than all other pharmacists when dispensing a biosimilar. If a physician permits a generic substitution, that must be disclosed
I do absolutely and totally agree with you that it is all about money.
https://www.accessdata.fda.gov/drugsatfda_docs/label/1998/trasgen092598lb.pdf
j
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Hi All, I haven't posted much. So much is going on ( working from home). I am doing A/C and have had 2 treatments so far ( next one is Monday). Initially the side effects were not Too bad, then my hair fell out last week and my husband shave my head for me. That was TOUGH! I did get a few hats and a wig. Unfortunately the wig is a bit too tight, so I had to buy a larger size. At least I feel semi normal when I am wearing it, even though the wig is much Grayer than my normal hair ( was). If anyone at work says anything... I will just use the the fact that hair salons are closed... and say I "stripped the color from hair, because I couldn't get it done" [ In reality I was NOT coloring it at all, it was natural. ]. But whatever! At least this pandemic is a "good" for something. I hope I can get used to looking at myself in the mirror?
I have been getting large itchy welts all over my body, has anyone else had that side effect? Also I am dealing with GERD - which I never had before! It feels as though there is a rubber band around my esophagus. Very strange.
Paula, I too am a serious gardener. I'm in Maine - so things have not warmed up for us yet, but the thought of NOT working in my garden is horrendous for me. I live for my garden! In fact my garden was supposed to be on a big House and Garden Tour this summer ( but I canceled it, when I got diagnosed) I had so, so many plans! I was thinking of wearing 2 pairs of gloves and a mask for gardening? To protect myself? What do you think.
Grocery wise... we have neighbors who kindly go to the supermarket weekly for us. 2 other smaller stores do curbside pick up.... so you email what you want - and my husband or daughter drive by - and they put the bags in the trunk for you. It works great.
Hang in there friends,
Lila in Maine
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ByHisGrace…..I noted how Herceptin was made, I even included that it is made from living organisms — in this case, a protein from a mouse cell. It is NOT Kanjinti that is made with this protein. Here is a link from PMC, (US National Library of Medicine-Natural Institute of Health.) And the link you provided states this as well.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC52673...
And yes, you are correct. When a drug is filled, the name of the drug MUST be clearly stated and in your case, it was. You provided a picture of your infusion bag, which very clearly stated "Trastuzumab-anns.".
I never said that the chemotherapy pharmacy was allowed to do otherwise. What I did say was that on your paperwork, listing your drugs, they can write "Herceptin" as the drug you will receive and then lawfully allow the generic equivalent. Much like a prescription from your physician, that your take to your pharmacy, that states a generic substitute is allowed. (And this was disclosed to you, on your infusion bag. The generic equivalent was very clearly written on the bag, for you, or anyone else to see.)
As far as your comment: "The FDA approval process on Kanjinti and other Herceptin biosimilars was for how it is made, not how it works in a patient. The presumption is if it's made substantially the same it should work substantially the same. That may or may not be true. Anecdotally, most people have experience with a brand name drug working differently than its genetic counterpart, in part, because of the wide array of inactive ingredients."
If this were NOT true, the FDA would not approve Kanjinti to be a generic equivalent of Herceptin and infusion centers around the country would not substitute it for Herceptin. And yes, people DO sometimes react differently with a name brand vs a generic because of the different fillers that are used. However, that does NOT mean that Kanjinti does not act the same in their bodies as Herceptin. Kanjinti still behaves like Herceptin in the body. It is the different, inactive fillers within the drug that can cause issues.
This was why I stated that if a patient has a reaction to the Kanjinti, their oncologist can request that the prescription be changed to "name brand only" (Herceptin), and most times the insurance company will comply.
The bottom line, you need to do what is right for you and will benefit you. We all need to be educated on what drugs we are receiving and the laws concerning those drugs. It is the only way that we can advocate for ourselves. Correct knowledge is power and can equip us to make the decisions that are in our best interest.
I hope that you can get this straighten out and since you changed oncologists, hopefully this one will listen to your concerns and give you the best treatment possible.
I wish you well.0 -
etnasgrl — respectfully i must disagree with your assertion about Herceptin. My research confirms it is not made from mouse protein as you stated but rather as I stated Chinese hamster ovary. This link is to the NCI formulary. The biosimilar Kanjinti is made from mouse. The difference can be life threatening to some people.https://nciformulary.cancer.gov/available_agents/Trastuzumab.htm
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sorry ladies, but you have made me giggle, cause my infusions bags are just hand written on in black marker pen, will see if i can take a pic on Monday
for all i know there is nothing in there but saline hehehehe. Either way for me it was the Perjeta that kicked my tush and has been removed from my infusions. I so do not miss the runs it gave me... but i do miss the weight loss, but ya cant have everything. Maybe my wobbly bits will make me a good candidate for diep Lilac, sorry to hear about your hair, but glad you got it shaved and found some headwear!! seems the only time i am wearing my wigs is to go to the MO office... Maybe Monday i will try the blonde one instead of my normal auburn and see if they notice.
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ByHisGrace…..I am honestly not here to argue back and forth. It is a complete waste of my time. I have much more important things to worry about than arguing back and forth with someone on a message board.
I have tried to be as respectful and informative as I can. That's all I can do.
Like I said, I wish you well and I hope that you get the best treatment possible.
As far as I am concerned, this conversation is over. You may continue, if you like of course, but I will not be replying.
Have a great day.0 -
Lilac....I've had GERD too. I've had it since the first week. Some weeks are better than others, but it's pretty much always there and just like you described, a rubber band around my esophagus.
I'm sorry about your hair.....it's SO hard, I know. As for getting used to the face in the mirror, I don't know if I ever will. It's like an unknown, old woman is starring back at me. I love my wig, but it gets hot, so most of the time, I just wear my beanies. They are much more comfortable and cooler. I even wear them around the house as I refuse for anyone to see me bald. Nope.....not happening! lol0 -
hey ladies,
long time no talk. Thanks for all the activities here I loved reading. With my friend whose having gerd yes that’s me too on an exponential level! My entire digestive track gets on fire for about a week! Most miserable. I sleep with my head of my bed about 25-30 degrees, I’m on two anti reflux meds and when it’s severe I take tramadol which barely helps. Good news is I learned a lot from my first infusion to my second so I’m hoping my third which is next Tuesday keeps getting a little more manageable. Notice I didn’t say easier as there’s nothing easy about any of this. Also I’ve needed a lot of extra support from hydration infusion and more iv steroids and nausea meds. Since my insurance denied neulasta I go in the following Monday thru Friday for a daily granix shot in its place it actually worked in my favor as I’m seen by a nurse and can get that extra care if needed. My angels have my back! Sending you all love.0 -
etnasgrl —- my apology. I must have appeared argumentative when I did not intend to be. My initial post was sharing my personal experience heightened and frightened by my life threatening allergies and trying to encourage others to be alert about what they were being infused with. I do sincerely appreciate your input and meant no ill will as I expressed disagreement with some of the information you shared. I meant to respectfully disagree, not be disagreeable. Thank you for your input and I wish you well.
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ByHisGrace….No need to apologize!
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Hello !
Well this week has brought horrible heartburn! I feel for all you ladies that have this a lot. This is my first week dealing with it. So far Pepcid and tums have been somewhat working. I’m making my kids brownies and I think that will be my dinner also ! I don’t have a taste for anything.
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Nooch40, sorry about the heartburn. Hope you are feeling better. That is a miserable feeling! This week has also had some interesting challenges. Not much appetite, fatigue, gastrointestinal stuff. Strange how I get the same chemicals infused every Friday but the side effects tend to vary from week to week.
Hope everyone doing well. Let's see, Friday will be number 6 of 12 so it goes on......
Take care!
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Hey Nooch40 - sorry about the heartburn. I get it sometimes and my oncologist just yesterday put me on Prilosec. I, too, had been using Tums as needed. He also switched up some other meds to help with my side effects, particularly the deep muscle pain. Today is my third treatment of TC. I am going to use cold booties on my feet as I have been having neuropathy. It will be a little harder to manage the cold booties with no family with me - family has not been allowed in my oncology center since March 12th.
I have been practicing "safe gardening" as it is prime planting and weeding season here in south GA. Very exciting to see my beans, cucumbers, tomatoes, herbs and flowers responding to the grow lights I set up in my garage. Something positive for me to focus on rather than the sad news all around me. I live in a very hard hit rural area -- you may have seen Phoebe Putney Hospital, Albany, GA on the news. My hospital has overflow patients from Albany, 40 miles from me. It is a very sad situation down here. Especially in the nursing homes and prisons.
Wishing you all a very good day and week....particularly those of us receiving treatment this week. Wishing you minimal side effects and maximal healing!
Julie
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hi ladies,
I have had issues with reflux previously but not so far on this treatment regime. Once it was that bad I actually thought it was my heart but they gave me a GI cocktail called pink lady at the hospital that fixed it right away. I do remember reflux (like pain or nausea)being one of those side effects that you need to keep on top of. Much harder to get rid of once it gets a hold. I was put on Esomeprazole (Nexium) and that kept it at bay.
Good luck all.
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Hi girls!!!
Chemo # 6 is today, so that means I'm half way done.....YAY!!!!
This past week has been ROUGH. The worst one yet, but that was because I ended up getting a UTI. Who would have thought that a simple UTI would knock me on my butt?!? Goodness, I felt horrible. No fever, thankfully.....but I felt miserable. Exhausted, weak, limbs felt heavy, nauseous, etc. After 2 days on antibiotics, I began to feel human again. Of course, I know that our immune systems are shot while on chemo, but knowing and experiencing are two totally different things! LOL!
Anyway, I am doing much better now and hopefully, my blood work comes back good so I can do treatment #6 and be half way done with this nonsense.
I hope that y'all are doing well. Much love!!0 -
Hello ladies!
OK so chemo #6 is complete so I am half-way there. I was a little anxious waiting for labs to come back yesterday because the time before last my white count was a bit lower than it should be. They did it anyway and since then it has gone back up but, you know, it is always a concern, and we all want to get this over with ASAP.
A little heartburn this a.m. Have any of you had a red face, upper chest and back the day after chemo? I keep forgetting to mention that to my nurse because it always leaves by that night and never comes back until I have my next session.
Hope you are all doing well with the chemo and everything else going on in your lives!!
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Hi Sharyn,
I get a little flushing the night of and the next day / night. I believe it’s minor allergic reaction to the paclitaxel. It is hard to remember all the things to mention. I keep a list in my phone for each MOs visit.
Cheers x
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Hi Sharlyn25,
I get a red face the day after my treatment. Has happened for all of my treatments. Haven’t looked at my back to see if the redness goes anywhere else.
I am curious if anyone has run a temperature after treatment? I am on Taxol/Cytoxan. I had a treatment Tuesday and on Thursday night had a fever. It never got above 99.9 so it was just low grade but it lasted over 12 hours. I was pretty miserable. My normal temperature is 97.6 and I almost never have fevers. My medical care team said that the fever was unusual. No other symptoms other than the normal (for me after treatment) indigestion, diarrhea, dizziness, and muscle pain. Of course my mind went to covid19 but we have been isolated from everyone except medical visits for 6 weeks now. Haven’t had a fever since that night
Hope everyone is doing well.....as well as you can be having chemo 😀.
Julie
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Hello Ladies!
I also get the red race the day after chemo. My nurse told me it’s from the steroids. Not sure if anybody else was told that’s the reason? I don’t believe it’s anywhere except my face. I can’t stand the steroids. I can never sleep the night of chemo. They doubled mine because I had slight reactions the first 2 taxols. I am going to ask this week if they can start weaning them back down.
I have never gotten a fever. I know there is a number to call if I would get one.
Hope everyone is doing well this weekend!!!
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Oh, I also get bad aches. The one thing that I have found that helps so much is taking an epsom salt bath. I was getting bad shin and lower back pains.
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