Topic: Starting chemo November 2020

Dec 22, 2020 07:46AM DanniB wrote:

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..

Dec 22, 2020 01:47PM Puncapher wrote:

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.

Dec 22, 2020 06:31PM Lisa1958 wrote:

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

Dec 23, 2020 06:12AM DanniB wrote:

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

Dec 23, 2020 10:46AM DanniB wrote:

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.

Dec 23, 2020 02:10PM nyc250 wrote:

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.

Dec 24, 2020 05:33AM Lisa1958 wrote:

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.

Dec 24, 2020 08:41PM RitaCarole wrote:

I also have had little bone pain with Neulasta, and I take Zyrtec daily

Dec 25, 2020 05:35PM sharon0706 wrote:

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

Dec 26, 2020 08:38AM marie914 wrote:

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.

Dec 26, 2020 10:37AM Maddy83f wrote:

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

Dec 27, 2020 08:54AM marie914 wrote:

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.

Dec 28, 2020 07:45AM - edited Dec 28, 2020 07:46AM by DanniB

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

Dec 31, 2020 03:04PM Jujumartin wrote:

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

Jan 1, 2021 03:04AM - edited Jan 1, 2021 03:07AM by DanniB

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