Starting chemo November 2020
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Lisa1958 - I have the same problem too with my gut and thrush. A few days after the first infusion, it got real bad. The abdominal pressure made it so uncomfortable to the point I felt like it was distended. I was advised to take GasX and stool softeners (I take Senna S) which helped. Sorry, TMI but the GasX helped me pass gas and relieved the pressure. It's tricky with the Senna S because I didn't want to get diarrhea so I was monitoring it closely. This second time around I was more prepared and took both meds just at the onset. Are you able to contact your oncology nurse to see what they recommend? I know you eat and drink real healthy so hopefully that helps too. As for thrush, I got it this second time around too. Mine seem to go away with the baking soda/salt mouth rinse, just about the same time I snap back from those weak days. Hope you enjoy the lights in LA. Would be nice to get out just a bit. I keep seeing on the news about the shut down. Is the area you're at affected too?
DanniB - gosh, it would be nice to get a 6 week break before radiation! I just want to get back to somewhat of a normal life before hitting the next treatment. I hope your muscle pain goes away before Christmas so that you get to enjoy the holidays. I saw on the news that the main shopping area (Oxford Street?) is pretty quiet, is that so?
Take care,
Jo
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Hi Jo - thank you, i hope so too. I really would like to have a glass of bubbly or red wine at Christmas (wishful thinking lol). Now that London and some surrounding areas are in top tier restrictions since the mutated covid discovery, it does seem to be quieter. Non-essential shops are shut and people are told to stay in..
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well, number 3 is tomorrow. Wish me lick
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has anyone heard the covid vaccine status for people over 65 undergoing chemo? We are a very high risk group. I am hopig sooner rather than later.
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Puncapher - wishing you all the luck for a nice and easy one tomorrow and the recovery afterwards!
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Jo -
For thrush, I have a Rx mouth rinse and I also have a “magic mouthwash” with some lidocaine in it which I alternate. I emailed my Dr today about taking an Rx Pepcid in the evening. I already take 1/2 in the morning. I struggle with eating more than a few bites at night. Doesn’t taste good and hard to swallow. Maybe I’ll try GasX.
We did get out to look at lights and stopped for some carryout Sprinkles cupcakes, a famous bakery. The mall was packed. I just don’t get it! Covid will never end with behavior like that, and it was Sunday after 8! The lights were fun but sadly I couldn’t stomach any cupcakes. So weird to have my passion for food taken away.
Puncapher - have heard no news on vaccine except healthcare workers and seniors. Not sure what the second tier will include. Good luck on chemo! Always nice to cross another one off. Seems like my next chemo date is how my calendar runs now. Not every month - every three weeks.
Danni - will a buttery Chardonnay ever taste good again? The closest to booze right now is a little Bailey’s sipped before bed on occasion. Zooming with my 4 sisters We’d. Might try a Gin n Tonic just to sip.
3 days til Christmas! 11 till round 4.
Lis
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Lisa - I was like you last week, a few days after my infusion. I could hardly eat. Hopefully you'll do better soon once your out of your down days. Yes, I'm familiar with Sprinkles cupcakes. They're so good! I've been to the one in Vegas and had to try their cupcake ATM machine, it was so cool! I've also been to the one in Austin. As a food lover too, it's hard when we struggle to eat. I'm off my down days now and I'm eating as much as I can although I still can't do the regular amounts pre-chemo.
Danni - I can't wait to drink some wine too! I'm a white wine drinker but have made a promise to myself that I can wait till after chemo is over. So come February, I'll have one for all of us!!
Puncapher - Saw on the news that people 65 and older are under Phase 1B and I thought they said early next year? Good luck for round 3! Hope it goes smoothly and quickly!
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Lisa - so glad you managed to get out and enjoy the lights. Pants about the cupcakes but their time will come! Have you lost the appetite because of nausea or is it the tastebuds? I am on Domperidone for nausea (good joke for champagne lovers ) and so far after both cycles i could eat everything. I have a funny medicine taste for the first couple of days but nothing too bad.
I had a sip of Burgundy on day 10 or 12 after first chemo, because we had a nice skype wine tasting organised by work and it just looked so lush - sadly didn't taste that good....
I passed my 2 muscle ache days too, have been sleeping 10 hours every night since chemo 2 - i never sleep more than 6-7 hours, guess the body needs rest.
I have a bugging problem with my scalp. It was really painful a week ago, then my hair started falling out and the pain / sensitivity stopped. Now its so itchy and looks inflamed with red spots. Care nurse suggested it may be folliculitis and that i may need an antibiotic cream - i really don't fancy adding another medicine. Have any of you experienced this? What is the best way of treating this? I have shaved my hair with 3mm setting (because the scalp at that point was too sensitive to touch).
Thank you, Danni x
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Good Morning. I had chemo Friday and today is Wednesday. Wow Monday and Tuesday were bad, but I guess still better than it could be. I was achy all over, headache, and lethargic/weak. Today I am feeling a bit better. I just need to take ibuprofen regularly and a lot of it to feel okay. I am taking claritin for the bone pain from neulasta but not sure how much it helps.
The taste buds seem a bit better this time but not good. I have had 3 cycles and they all have been different. The first one my taste buds were awful but only for about 9 days and I cracked a tooth chewing on ice. and the bone pain was really bad the first time. The second time the bone pain was better but my taste buds didn't come back for 14-16 days. This time the bone pain was bad and the taste buds are bad but they seem to be a bit better. I can eat certain foods. I have a hard time drinking anything though. I try to eat soups and stuff to get the liquid. The first two cycles I was hyper (from the steroids??) but just before the third cycle and now I am so lethargic and weak. I keep moving but I am trying to rest too. I only have one more cycle and I can't wait to get it over with.
Danni - sorry about the nausea. My stomach hasn't been too bad. A day here or there it cramps but no nausea. I would love to sleep that much but I just can't seem to sleep even though I am tired. I was always a good sleeper before chemo and all these drugs (steroids). I cold capped but I kind of wish I would have just let it go. It is still a mess and it sheds. We will see when it starts to grow back.
JoW - I go through days I don't feel like eating but just a bit in my stomach helps. I find 2-3 potato chips or fries help. Not sure why. don't worry about TMI - that is what we all are here for is to help each other.
Lisa - I haven't had thrush or any real mouth sores. I have been using biotene toothpaste and mouthwash. I hate that nothing tastes good especially during the holidays.
puncapher - hope today's infusion is going well. My best day is the infusion day. Not sure why.
I am wondering what each of you is getting and where you are in your journey.
I had a left mastectomy 9/14 and an expander implant put in. I have been getting fills in it since. My surgery went great they got good margins and none of my lymph nodes were positive. They ended up taking 8; not meaning to. So I thought I was fine just implant fills and then exchange surgery when they put the real permanent implant in and take out the expander (which can be uncomfortable). Well my mammoprint (like an oncotype) came back slightly high so they wanted me to do 4 rounds of chemo TC Taxotere Cytoxan so I am doing that. Not sure if I want to take any other medicines when this is through. I feel like I am done.
I had the mastectomy so I wouldn't need radiation so no radiation for me. I just didn't want it. My sister had it and 25 years later since has skin problems, but I am sure they are better nowadays. They didn't say anything about a bell and I never heard anyone the last three times I was there. I'm there from 9 to 3 so a long day (because of the cold capping).
Oh I'm 60 by the way. I turned 60 on my mastectomy surgery date 9/14 so I am past menopause. I still work full-time but I have been working remotely. I used to travel alot but I haven't traveled since Feb 2020. I am married with 4 grown sons.
I would love to hear your stories.
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Hi Marie - so lovely to meet you. Loved reading about you.
I had a lumpectomy on 16 Oct. The cancer was small, 1cm but it was near right under the nipple so my lumpectomy looks more like a mastectomy - i lost the whole front. I had 4 lymph nodes removed and whilst they looked clear on all scans and no one expected it to have spread, 2 of them had cancer in. The doctor said it was probably because the cancer was close to the skin. Anyhow, because the lymph nodes were impacted, i needed chemo. My oncotypeDX came back relatively low at 16 so the doctor recommended a short cycle of x4 TC Taxotere Cytoxan. After reading about TC, i asked if this can be substituted with Taxol (Paclitaxel) alone. The oncologist agreed and here i am. I am on a two-weekly course, 2 down 2 to go. Next one on 31 Dec.
I will have to have radiation after followed by 10 years of Tamoxifen. Im 39 and was pregnant at the time of diagnosis on 25 Sep. We lost the baby before the operation and now have so many pangs on what we should have been doing instead of what we are doing. Before my chemo started, i had a fertility preservation treatment which resulted in overstimulation and suspected ovarian torsion which was awful and i ended up in A&E on morphine. Morphine was 'fun', first drug for me that ended up in a night full of visions lol. It eased the pain so i am grateful. At the same time as i had the egg collection procedure, my partner was being diagnosed with Thyroid cancer - really can not make this up. His operation is scheduled for 14 Jan.
I worked till the day of the operation (i am an auditor in the bank), but found that i couldn't do much after so have been off work since.
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Hi Lisa1958 et al-
I have experienced thrush and tongue sores (like little paper cuts and like a burned the tip of my tongue). I brush and rinse carefully as others have outlined. I have a scrip for Magic Mouthwash if needed and a Dexamethasone (steroid) rinse as well.
In addition, here's some research I found that you may want to ask your onco about. Hope all this helps!
-Renbird
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Hi Tanya (my onco)-
With careful attention and vigilant mouth care, I've been able to keep my THRUSH/MOUTH SORES at bay for the most part, although I still have the sensation of a few tiny "papercuts" on my tongue. I am concerned that with treatment #3 I may have a return of the the thrush/mouth sores. Have done some research about "prevention" as well as treatment, but I'm more interested in prevention, as you might imagine... any thoughts about these items? How is the Dexamethasone different?
A. Caphosol for Oral Mucositis
A mouth rinse that is used to *prevent* and treat oral mucositis. Caphosol is an electrolyte solution made of sodium phosphate, calcium chloride, sodium chloride, and purified water. Once mixed, Caphosol soaks into the tissues of your tongue, gums, hard and soft palette, restoring moisture into the cells, and lubricating sores and scratchy areas. It is thought that the calcium ions help reduce inflammation and improve circulation and both phosphate ions and calcium may promote healing.
B. To treat oral thrush, a yeast infection, here are 3 antifungal meds:
-Fluconazole (Diflucan) an oral medication
-Clotrimazole (Mycelex Troche) a lozenge
-Nystatin (Nystop, Nyata), a mouthwashThoughts?
Thank you! -Ren
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I had standard ACT chemo with the typical side effects. I had the neulasta shots the day after chemo and had no reaction or side effects at all. It was winter when I had chemo and despite taking a the shots, I picked up a fever and infection and my white blood cellcount plummeted and I was hospitalized in isolation for several days. It was a very dangerous situation and one you don’t want to mess with. Please use the neulasta and I wish you all the best.
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hi dannib sorry for the delay but as far as my raw veggies and fruit I am getting organic and washing with veggie rinse prior to putting them into my ninja auto iq blender. I was told by my physician and after read some journal article online that said taking supplements can actually counter the effects of chemo since most have anti oxidant effects causing higher re occurrence rates, however it was advised to consume the appropriate vitamins and minerals from diet ie 8-9 servings of veggies and fruits per day.
Good luck and congrats on finishing your second round! Much love all and Merry Christmas and happy holiday
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Nice to hear people’s stories! I had a 2 cm tumor found at annual gyn exam early October. Took forever to get the FISH results but I have HER2+. Plan is 6 rounds chemo then surgery then radiation. 2 rounds done. They keep saying this is a marathon but I had no idea it would all take do long. My infusion nurse said I will take Herceptin and Perjeta for another year! I am getting carboplatin and docetal as well.
I am 62 years old and moved with husband to LA area to be near our kids and grandson. So happy we made that decision 18 months ago! Due to Covid both of us are unemployed which is a blessing in some ways. But sucks financially.
My stomach has been bad since round 1. I talked to dr today and she says that shouldn't happen so increasing Pepcid. May move to prilosec if that doesn’t help. I don’t think its working since Im up at 2:30 on the form waiting for my gut to sertle
Nyc - how terrifying!Ren - thanks for mouth tips!
Fanni - thanks for sharing. That all sound hard. So sorry!
Marie - I thought about choosing mastectomy too just to skip radiation and have less worries. Talking to surgeon in January.
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Hi. My story: I’m 49 and got BC first when I was 33. I had a mastectomy with delayed reconstruction. I had 4xAC back then. I didn’t have any nodes affected then. I took tamoxifen for 5 years.
This year I felt a lump in my armpit which initially thought was related to my Lymphedema but turned out to be a recurrence. In July I had the lump removed but didn’t get clear margins so started 33 sessions of radiotherapy in Sept and am now on 2/6 TC. Next infusion on 31Dec.Overall I felt the 2nd one easier than the first but developed oral thrush which is hard to clear up. also finding the 3 weeks between infusions crawling. Just want it over but last one not until March so I’ve a bit to go yet.
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I also have had little bone pain with Neulasta, and I take Zyrtec daily
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Merry Christmas everyone
Rainyday - i will think of you when im having my next infusion on 31 also
Baile - thank you, sounds good. To be fair, because my 2nd session was harder on the stomach, i've been eating veggies non stop regardless. i've just been washing them with boiling water or cooking soups like minestrone.
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Hi other people with mouth pain.
After I had mouth pain after my first round of TC, my doctor prescribed chlorhexidine mouthwash to swish and spit with twice a day. It's prevented mouth problems for me after my second round of TC.
I can't remember if I already posted this here, so apologies if it's a repeat.
It's medicinal-tasting but has been worth it.
Sharon
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DanniB: May I say that my heart broke for you when I read that you lost your pregnancy on the day of your diagnosis in September and that your partner was diagnosed with thyroid cancer. That is just too much to bear.
I am so sorry that you are facing these unfair hurdles, especially at a time when it's so hard for loved ones to support each other in person. I am hoping for the best for you.
Sharon0 -
Hello! I hope you all had good days yesterday. My last infusion was Friday the 18th and I thought I would not be able to eat until after Christmas. I started being able to eat a few days ago but taking it easy. Yesterday my son was here and cooked us a grand meal - prime rib, mashed potatoes, asparagus, etc. Of course about 10 minutes before we ate my stomach started cramping severely and I was in the bathroom for quite a while. I felt like I ruined the dinner. I couldn't help it though. I cold capped and some of my hair fell out around my 2nd infusion which is to be expected even with cold capping. Then a few days ago it seems like more is falling out. More than the normal shedding. I don't really even care anymore.
Sharon - about the mouth. I never had mouth sores or thrush or anything like that for the three infusions. My mouth problems are taste buds. Nothing I drink seems to taste okay and some food I can eat and other food I cannot. Did that mouthwash help that or just the mouth sores?
A little down today but it will get better. I am lucky I only have one infusion left and I can start with my exchange surgery and start feeling better.
I'm a little apprehensive about my exchange surgery since I want the expander out and implant in but the other side not sure what to do. She wants to do a lift and reduction. I don't want the reduction. PS I think want perfection. I don't care if I have to put a small stuffing in my implant side to have it match. I don't really want to go through a worse surgery (reduction) just so they are perfect. I also can't get a feel of how long recovery will be. I recovered in two weeks from my mastectomy but not sure on this surgery. If it is worse or better. I guess it depends on the reduction and lift part.
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marie914,
I too think the PS want perfection! When I met with one last month, one of the first questions was " did I want to go bigger?" Ummmm no, I am just here to get information. I am only considering a single mastectomy. I asked if they could make that side resemble my good, non surgical side? He seemed perplexed! Started talking about lifting the good side to match. I really don't want multiple surgeries. I'm thinking of going flat on the right side and using a prosthetic in my bra. When treatment is all done, I think I won't want to spend anymore time with a doctor than necessary! Good luck to you.
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Sherichie, I am about 11 months ahead of you, and I feel really good! I had a double mastectomy on Dec 2 '19 and learned when I woke up from surgery that chemo/radiation needed to be added to my treatment because I had some positive nodes. I started chemo Jan '20 - DD AC followed by DD T - ended in April and then had my TE exchanged for implants in May and started radiation in June. I am taking tamoxifen and truly could say I have barely any SE - I have gained some weight but so have many people due to pandemic . My hair is back - there is lots of it and it stands straight up! just enough curl to make an afro lol. I have found that with a lot of hairspray I can rock a pixie cut. This past year has been tough - but it is doable and I want you to know that a year ago I would have never believed I would feel as good as I do now. One day at a time - treat your body as if it belongs to someone you love
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Hi everyone, hope you all were able to enjoy Christmas or the festivities!
Marie - looks like you'll be the first one amongst us to be done with your chemo. When is your last infusion? I hope we'll still see you after that. I have 2 more rounds of TC, the last being on January 25. I keep reminding myself that I'm 50% done. I've been through so many phases of emotions with this journey I'm not sure how I will handle it when I get done with chemo. I know I will be relieved but there will be other things to think about. Like you, I currently work from home too but plan on going back to the office after chemo. With my hair gone by then, I will have to see about getting a wig. That's been on my mind but I've decided not to overwhelm myself and will deal with it in January.
Danni - my heart goes out to you and your partner. It is a lot to be faced with.
Rainyday - sorry that you're going through it again. Will they put you back on Tamoxifen or are they switching you to something else?
Re. mouth problems - I can attest to what Sharon said about Chlorohexidine. I'm not using it now as the baking soda/salt solution has been working for me but I did use Chlorohexidine a while back when I had work done on my teeth. It's an antiseptic mouthwash and it helps prevent infections. It does have a medicinal taste but nothing too bad.
I'm coming into my last week before I have my next infusion on January 4. I've been doing good and am thankful I was able to somewhat enjoy Christmas yesterday. I'm focusing on eating good and am supplementing with Boost nutritional drink. I'll have my blood work done on Thursday so just preparing for that.
Take care,
Jo
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Jo - my last chemo is January 8 and I cannot wait for this to be done. I don't know how people have so many more treatments. I'm glad I don't have to go into the office or travel. I did keep one wig but I just can't get used to wearing it. I can get by with a ball cap and ponytail since I had cold capping. My hair does seem to be shedding faster the last few days. Enjoy the week before chemo - always my best week.
JuJu - I had the surgeries before chemo and no radiation. I would think about flat and use a prosthetic in my bra if I had to do it over. I don't mind the expander - it has been fine. However they can't fill me or have an implant as big as my other breast so I will use a prosthetic probably anyhow (unless she does the reduction on the real breast). I agree with done with doctors and surgeries. I use the prosthetic now in my expander breast since it was "growing" and was so much smaller than my real breast. I don't mind it at all. When I am relaxing in the evening or during the night I go braless and it is fine. I don't regret the expander but I just don't like all the mess with trying to make them look perfect. I am 60 - done with that. I just wanted breasts but after chemo I am like I don't care anymore.
Rainyday - some of the time I have been let's hurry up but it is almost here for me - it goes fast.
Lisa - I'm 60 so close. I am still working and my husband has four more days and will be retiring but working part-time most likely. We both work at home. Los Angeles would scare me with COVID and the high cost of living but it is nice to live by family. Pepcid helps me but just eating smaller more frequent meals and bland foods helped me but I think everyone is different.
nyc250 - thanks for stopping by. How are you doing now? I would love to hear your story. I am definitely keeping with the neulasta but the bone pain is bad if you do get it. I have tried everything and for the two worse days - ibuprofen every six hours and claritin twice a day and I know the steroid or opiod pain medicine woudl help but I have refrained from them.
DanniB - I am so sorry you are going through this and the loss of your baby and your husband's cancer. I will keep you in my prayers and thoughts. Please vent to us all you want. You seem to have a great attitude and you will beat this - both of you.
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Maddy83f: Thank you for sharing this line, "Treat your body as if it belongs to someone you love." It's helping me.
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Thank you all for your kind thoughts and prayers
On the subject of perfection, it is a very personal choice. I chose to go lopsided, i thought the sight of loosing half a breast will shock me but i actually dont care. I dont want a reconstruction or a reduction of the other breast, i am being asked these questions regularly by the doctors, but there is no way (at least at this moment) that i would choose to go under another operation without medical need. It may all change in the future, but for now this feels right. x
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Happy new year everybody! Let it be a kinder one
3rd chemo today - no drama this time (aka allergic reaction) so happy! One more left
Love to all x
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DanniB,
I am also thinking of going flat after single mastectomy in April. I really don't want to spend anymore of my life in doctors offices, operating rooms, recovering at home etc. Prosthetics have come along way! Good luck to us all in 2021. Happy New Year
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I had my 3rd TC chemo today. It went very well. Came home wondering if I actually got anything at all as I felt so good. 7 hrs later I'm going downhill now so I doubt I'll be awake to see in the new year. (just over an hour away) Only got a few hours sleep last night with the steroids so hopefully I'll sleep tonight.
Like Marie914 I've so little hair left I'm past really caring. I thought they would laugh at me for using the cold cap again but they didn't. I'll persevere in the hope it helps it grow back quicker. I'm half way there with 3 more to go.
JoW888 The plan depends on my menopause status. I've already been through temporary menopause several times at this stage but I reckon I'm fully in menopause at this stage. When I said that to the surgeon she said 'fingers crossed' Not sure why. I presume it's because there are more options post M when there's only tamoxifen pre M.
DanniB good for you to be down to only one more. It's great to be able to mark them off on the calendar.
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Rainyday - so glad to hear your 3rd one was as uneventful as could be! I was wondering if we were having our cocktails at the same time (mine started at 1.35pm). Do you have one more left? Are we on a similar protocol? My 4th and last is on the 15th Jan. I had a one stop shop yesterday so was in the hospital from 8.30 for bloods, doctor's then chemo and only got home at 5.30. Because of the allergy and steroids, i also didn't sleep a wink the night before plus i get extra antihistamines in IV, so yesterday i was out like a switch before 9pm - best night sleep till 7am. I wouldn't have woken up if i din't have to take more steroids today... Hope you slept well also and feel a bit more rested on this first day of 2021.
Jujumartin - i find it a bit funny that my oncologists (both the surgeon and medical) and the care nurse keep asking me at every appointment about my decision to have the reconstruction. I keep telling them i dont want it and they all say thats ok but you can always change your mind later even years later (ehm, dont' think so lol). But still nice to know there are options.
Re-cold capping - i had a random chat with the nurse before the infusion yesterday (they always check beforehand if people are cold capping). I lost all my hair at the crown right after the 2nd chemo (about 16 days after the 1st), only a bit hanging on sort of bottom back and because of the inflammation i had it all shaved after that. So when the nurse asked if i was cold capping, i sort of giggled and pointed that im totally bold what would be the point. She said that even if people do go bold with cold capping, they advise everyone to persevere because the hair re-growth occurs faster.
Marie - hope you are getting excited about the last session coming fast
A little something to hopefully make you laugh - do you get a call from the hospital a day before the visit to check if any covid symptoms have developed? I do. Last one had a new question added to the list: 'Have you travelled to South Africa in the last 10 days?' yep, sure. gotta love the optimism
Best day to all xx
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