Starting chemo November 2020
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DanniB. I managed to see in the new year after all but was in bed by the end of Old Lang syne. Had a great nights sleep. I’m on steroids for the next 2 days too.
I’m only half way as I’ve 6 in total to get on a 3 week cycle so 21st Jan is the next one.
I too get the call from the hospital to go through COVID questions and every time have to answer yes to some of them like loss of taste, sore throat, body aches. It shocks them every time. You’d wonder when they are ringing on behalf of oncology and chemo causes everything on the list.
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Rainyday - half way is awesome! Less now than last time
. How are you feeling today? I got a very irritated, itchy scalp again - so tender ouch. Otherwise, day 3 so far so good. I think the muscle aches are close but not needing pain relief yet. Oh and i had to take a sleeping pill last night after not sleeping the night before.
Hope everyone is in good spirits
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DanniB still feeling ok this morning. Took Neulasta at 5pm yesterday and so far so good. I'm almost afraid to say that in case I jinx myself.
My scalp was very itchy last week too but switched to head and shoulders shampoo and it feels a bit better now. It's paraben free too so thought it was worth a chance and I have it in the house with a teenager who used to have awful dandruff.
My head is freezing though. I have to wear a light cap around the house and a 2nd wool one if I go outside.
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Hi everyone, it's nice to read all of your updates. Happy new year, and happy almost-thru-chemo for everyone who was doing 4xTC. My final infusion is on the 14th!!! It was delayed by 6 days because of holidays AND because my boyfriend tested positive for COVID while I was out of town for Thanksgiving, and I had to move into an Airbnb and have 2 negative tests before I could resume treatment. It was HORRIBLE on top of everything else I'm dealing with. I also had to take work off for that week, unpaid.
I'm 33 and I think my age and otherwise clean bill of health probably has something to do with the lack of side effects I've experienced. They're there, but pretty mild and only last a week. At this point it's mainly insomnia and fatigue, and a terrible headache the day after the Neulasta shot. I have also gotten nasty heartburn a few times which never used to happen, my period is now 10 days long at about 2 drops a day (haha), and hot flashes have increased frequency. They're not so bad now because it's winter but if they continue when summer comes I'll be miserable!
I have been using Penguin cold caps for 8.5 hours the day of each treatment, as instructed. So far I've lost about a quarter of my hair, maybe a little more. I'm only halfway done shedding though. I can still pass for normal because my 3 bald spots are hidden but if I lose much more I'll be out of luck (I have fine hair). Still counting it as a success, since the hairdresser will have something to work with when the hair starts growing back in, but I foolishly held out hope that I would keep enough hair to just go on as usual. I spent 9 years growing my hair out after I shaved it for fun in 2011, and it sucks to have this taken as well as my breasts and my estrogen. Honestly this has been the most stressful part of chemo by far, not knowing how much hair I will lose but seeing it shed nonstop. I completely understand the practice of just shaving it off before it even starts going.
Anyway it's good to be almost done, I see many of you are too. We're almost through it!!!!!! I've already made my consultation appointment for my exchange surgery, January 28. Yes!!!!
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Hi Etincelle - happy new year to you too lovely! I really feel for you, im not in a bad shape, but on the 3-5 days with muscle aches even moving in the house has to be strictly strategical (lol) let alone moving house and then worrying about have i, have i not and not being paid. Sorry you had to deal with this - big massive hug
28th will be here before we know it. Since i had an allergic reaction to Taxol and need to take loads more steroids and antihistamines, i got Zopiclone at tiny dose - its been brilliant for sleep, maybe check if you could have this? 0 -
Hi everyone.
Yesterday I had my third of four rounds of TC. I feel like I'm slowly getting the hang of the rhythm.
This post will make those of you who have a port happy about having a port! I do not have a port, and the IV generally goes in the back of my hand.
I wear those frozen booties and mitts for one hour of treatment, and even though I wear silk glove liners I end up fidgeting too much with the mitts, taking my hands in and out to give myself tiny breaks.
In my second round three weeks ago I nudged the IV needle one too many times with the mitten and the chemo actually leaked into my hand. The nurse switched it into the other hand but I got a big red spot in the area that is still healing.
This time, the nurses's solution was to put the IV needle in the other arm this time, above my hand. So the mitten didn't bump the IV at all and everything went okay.
The other thing that I did differently that I wish I had done in the start was to bring my own electric blanket throw to use during that hour. It was quite comforting and the heat lasted much longer than the heated blankets the nurses provide.
Other notes. I've been using Paxman scalp cooling, and my NP said I have maintained more hair than I would have without scalp cooling. I got the feeling she might have just been saying this to be nice, and because she knows I shelled out $1200 for it. But it made me feel better.
My lashes are slowly dropping. She said this usually happens week 8, so I'm a little premature.
My oncologist has made the decision to have my ovaries surgically removed after chemo. Is anyone else planning to do this, too?
Take care all. Nice to be in this with a group.
Sharon
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Hi Everyone,
Just like Sharon, I had round 3 of TC on Monday as well. Today is day 3 so I can feel it kicking in. The downing water light switch got turned off again so I'm back to adding juices to my water. I've been having heartburn too the last few days. I'm not sure if this a new side effect as I hadn't experienced it previously. I'm going to try and finish these 3 weeks strong by trying to eat as good as I can!
Hi Etincelle - good that you're almost there! Did you lose your eyebrows or lashes?
Hi DanniB & Rainyday 7 - how are you all doing? When do you all get done with your chemo?
Our November chemo group is getting quieter as more of us get done. Hope everyone's doing good.
Take care,
Jo
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Hi All
Sharon - sorry about the IV trouble, mine is not good and is done with the help of ultrasound. Glad they did it in a more comfortable spot though. I have not used the cold mittens, and am suffering with the finger numbness, which is quite frustrating.
Re-hair - those of you who are doing the cool capping, just to give you some comfort that its working - mine was all gone by 3rd session (head and body). The only thing that remains are eyebrows and eyelashes, but these started shedding now also.
Jo - this third one is a murder for me, definitely cumulative side effects. New thing on day 5 was actual sickness (only nausea before) and left back sided / round the tummy ache that literally made me cry/howl for a couple of hours that day. I couldn't take the pain relief for muscle aches so found this time the hardest to deal with. It is the second night that i can not sleep either and refuse to take the sleeping pills because all i can taste is medicine in my mouth and i dont wont to be sick again. Sorry for such a downer...last one on 15th for me and i am not looking forward to the recovery. My partner's surgery is on the 14th coming home on the 15th so between us, we will need to get the adrenalin running to get through the the week after.
Tomorrow i have a video consultation with the radiotherapy doctor to go over the plan for that. Are any of you doing that?
Also, is anyone taking time off for treatment or soldiering through?
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Hi all. After a good start with my 3rd round I went downhill for the last few days. Like Danni I actually got sick this week and felt very miserable for 2 days. Hadn't the energy to get off the couch for 2 days but its starting to get better now. Must be the cumulative effect.
I'm not finished until 5th March so I'll probably be the last one here. I'm getting 6 at 3 weekly intervals.
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DanniB and Rainyday7, I sympathize so much. My third round has been harder. My reserves are tapped and everything feels overwhelming. I cry more, sleep more, isolate more, poop more, catastrophize more.
Jo - how is the nutrition stuff going?
My chemo is every 21 days. I don't work during the week of chemo and then I work very part-time (8-10 hours) for the following two weeks. I'm very lucky that I have this flexibility right now.
Thank goodness I take Ativan to sleep. It's sad to say, but I look forward all day to taking it.
Going to try to summon the energy to take a shower.
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Well said Sharon0706. I feel the same way. The 3rd round really kicked my butt. No energy so tired. I feel weak as a kitten. My reserves are gone and I just can't handle it anymore. I told my doc how I had been feeling and she prescribed Lexapro every day and Xanax on standby for when it gets really overwhelming. Oddly enough just knowing it is there for me, I feel better. Only used it once. Came in handy when I had to have a drain put into my seroma in my arm pit that wouldn't stay away.
I also learned an interesting fact. I have been sick for a week with fever, laryngitis, sorethroat, coughing up crap. My doc did a covid, strep, and flu test, all negative thank goodness. Apparently you can still get just regular sick.
My fourth and last chemo is next week. I just want it done! I'm hoping I recover enough from whatever this is that they won't postpone it.
I have a Telemedicine session with my radiation oncologist on Friday to discuss the next phase. Part of me says, let's just do it and get it over with. Part of me wants to wait until I recover at least a little of my strength back. What do you think?
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Hi ladies, it looks like we're all going through a tougher time with round 3. I'm still struggling all around, Through the day, it feels like my head is in a fog, my legs feel weird and achy.
Sharon - no where close to eating great. In fact, I feel overwhelmed. Just thinking about what to eat to get food in me is hard enough. My heartburn has eased up a bit but I'm getting these itchy rashes that come and go and have to take Zyrtec for it. I'm back on the emotional roller coaster and all I want to do is go lay in bed. Trazodone has become my good friend.
Danni & Puncapher - I have radiation after this but I really would like a break. The nurse called me back today because I had asked about getting the COVID vaccine. She said my oncologist would like all her patients to get the vaccine (even undergoing chemo) and that we'll all be contacted when doses are available but at this time, no one knows when. I really hope that I can get the vaccine before radiation starts. They have not scheduled me for radiation yet so I'm hoping it'll be late Feb or March. I have 20 sessions. Do you know how many you all will have?
Rainyday - hang in there, early March will come around quick. Keep feeling better!
Take care all,
Jo
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Sending a huge massive hug to you all lovely ladies - i got a lump in my throat reading how each of us is basically going through the very same motions of overwhelming feelings and physical hardship! I imagined if we could join together for a pyjama party, a nice movie and some good hearted laughs.
Rainyday - i will stay with you in this group till the last one of us will get through this. Hope it will even out with the side effects. x
Sharon - thank you for sharing, i cried myself to sleep for the first time in ages last night. Just felt so sad and overwhelmed like you say. Re-work, I took sick leave from 16th Oct when i had the operation, came back for a couple of days, totally freaked out that i have no patience for people which is the key part of my job and thought i needed to retreat instead of causing a scene. If i didn't have the option of taking the leave, i would think i'd have to resign, the mental capacity for me to do my job is just not good enough at the moment (about 3 good days before each chemo) I hope i will be able to do some sort of phased return during the radiotherapy. Only issue is that my hospital is an hour and a half each way from home so everyday trips will take half a day.
Puncapher & Jo - my initial consultation for radiotherapy was via a video link. I would recommend you have that, because (at least for me) it was for information purposes. The dr went over the key risks, the odds of them happening, based on my current health levels, and explained what procedures i will require. I wrongly thought my i will only need the breast and the underarm done, but it transpires that these areas are captured by the breast radiation in any case. Because i have 2/4 lymphs involved, i also need the area above the collar bone (this is apparently where the rest of the axilla lymphs are hiding) and the central breast bone (because my cancer was in the middle of the breast, so the closer it is to the middle the more chance of needing the central radiation also). With the latter procedure, i am given a choice to have this done or not so im doing some research now into lung and heart impact. Im 99% that i will do it. It wasn't an easy one to digest, but i always prefer to know in advance - so see how you feel about getting information?
As i have managed well with the bloods so far on the accelerated 2 weekly DD cycle, my pencilled start date is 8th Feb. Basically, they gave me the 3rd week to recover fully, which i feel happy with. The driver for me to pursue things as fast as possible is that because i want to start hormonal therapy asap. We have 6 embryos waiting patiently and as i will turn 40 in April, im not so patient lol. Because of the low oncotype score, the medical oncologist has said that he will allow me to come off them after 1 year to have a go at trying for a year so this is my motivation to get this done soonest. I will get tattooed next thursday.
Re- SE, i've got all eased now apart from numbness in the fingers and cramps in the calves. These give me the heebie-jeebies as i keep thinking it could be thrombosis and start panicking...silly.
Love and a really good day to you all,
Danni
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I forgot to mention, if i agree to the central breast bone then i will have 3 weeks x15 sessions because they can add booster to it. If I choose to forgo that, then i will have 4 weeks x20 sessions also.
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Good Morning! My last day of chemo. Fourth session of TC Taxotere and Cytoxan.
My chemo does not seem to be as bad as yours has. I have a couple bad day each cycle but the only thing that is cumulative is tiredness but not too bad. I take 2-3 walks a day; some 1/2 mile and usually 1 a little longer. I think it all helps. I had a few stomach issues but only for a day or two. Christmas Day of course was the worst I had but my son was here and we were eating my rich foods. I'm so happy to be done today and just recover. I do not need radiation or other surgery besides the exchange of my expander to implant. They are planning to do it February 1 - only 3 1/2 weeks from today - my last chemo. They said my bloodwork has always been good so they think I will be fine. Of course they will check me when it gets closer to see how I recover from this fourth chemo.
I have been working full-time during this but I do work remotely. I do webcasts for clients up to 60 people and I do other work too. I use to travel but not since COVID so that has been helpful not to travel. I take off chemo day (sometimes I work on my laptop since I am wired from steroids) and sometimes the 4 or 5 day I take a nap or take 1/2 days. My third one was December 18 so I took the rest of the year off since I had vacation left so that was good. This month we are busy so it will be harder but I will take care of myself. Since I am 60 my kids are grown and gone and it is just my husband and our two dogs. He has been great through this so he helps alot. He works remotely too.
I will be praying for all of you and checking in.
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Wonderful news on completing the chemo course Marie! So very happy for you - wish you a speedy recovery and a nice and easy exchange procedure. Would be lovely to hear from you later to see how it went and how you are.
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Well done on finishing Marie914. Onwards and upwards from here.
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I'm home and done with my 4 infusions of Taxotere and Cytoxan. My blood work was good again this morning. I finished the Dignicap today too. I only kept 50% or so of my hair but it was worth it I guess. I still have my eyebrows and eyelashes - I have been using serum on them. Hope it worked.
No bell ringing or anything. No one really said much to me about it being my last. But no problem. My friends did a zoom where they all ranged bells.
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Yay Marie!!! I'm glad everything went well!! Another chapter of your journey closed! I wish you well and thank you for getting the November 2020 chemo group rolling. I think we have all come a long way! I hope you'll check in and let us know how you're doing.
Congrats & Hugs,
Jo
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Congratulations to you, marie914! So happy for you that you have this chapter behind you! You must be so relieved not to have to put that frozen helmet on every again.
What serum have you been using on your lashes and brows?
Let us know how the implant procedure goes.0 -
pronexa by hairgenics lavish lash Is what I have been using. I saw other things people suggested but I couldn’t find them available.
I will check in the next week and let you know how it is going with lashes and side effects. Even though I am happy to be done with chemo; I am dreading the next week with side effects so I’m hoping it goes well.
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I’m not in here too much, but wanted to mention that this past Wednesday I finished my last chemo. 4/4! I’m so glad this part is over with. Now I’m in the feeling gross mode- resting. I go back in two weeks to see my oncologist and get blood work. I have an appointment with the radiology oncologist to do a mapping for my radiation in three weeks, but will probably actually start the radiation in about 5 weeks. I think my body needs the rest before moving onto the next phase.
I did do DigniCap and am glad I did, even though I lost probably 60 percent of hair. If I wear a wide cotton knit headband over the crown of my head, you can’t tell it’s missing. I’ve heard it should grow back faster and thicker because of the cold cap. Crossing my fingers!
The third round was tough on me. I got a terrible rash required different steroids, (which I have trouble with), terrible stomach cramps/ gas x helped a lot, and took Pepcid for bad heartburn. Terribly tired, sleeping only 4 hours a night. Thus round-4- so far seems better tolerated. Strange, but grateful.
Hang in there everyone- it will get better! Peace to all
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Congratulations Elledwriter. I just finished Friday January 8. 4 of 4. Did you get to ring a bell? They don't do that at my place anymore after COVID. I go back the end of the month for blood work and oncologist visit. My blood work has been great throughout. I am having exchange surgery February 1; replacing my expander with implant so hopefully my blood work will be good again.
I lost about 50-60% of my hair using dignicap too but I hope it comes back quickly too. I have to wear a baseball cap when I go out since my forehead lost a lot of hair especially since I had a high forehead anyhow and the top of my head is bald underneath some strands of hair.
I hope our fourth round side effects will be better and we can get on with our lives. I am glad they give you time before you need radiation. I had a left mastectomy and clear lymph nodes so no radiation. Hopefully I am done.
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hi everyone! Had high hopes for 3rd round since they were switching from biosin of Herceptin to Herceptin. Things were okay then I got what they think is a kidney stone so ended up in hospital for 2 days. I sure hope to go home today. They keep moving my room. The tv doesn’t work and my devices are dying. With no guests I feel like im in prison. Talked to surgeon and it looks like a bilateral mastectomy in my future. Ugh. Not looking forward to being alone for that. Feeling a little sorry for myself today.
On the upside i got the sweetest little puppy for Christmas!
Hope everyone is hanging in there!
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Oh Lisa - goodness me, you didn't need that on top of everything else, you have every right to feel how you feel. Massive hug and hope it gets resolved soonest so you can go home. What exactly are they doing to it, is it just monitoring or did you need a more invasive treatment for the kidney stone? Re-bilateral mastectomy, did the dr talk timings? Mine was mentioning a couple of years (before my genetics came back) so if timing is not an issue, maybe this could be done at a better time when you wont need to stay alone? Hang in there lovely.
Hope everyone else is doing well. Marie & Elledwriter - hope your last recoveries are tolerable.
Danni x
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Hi Lisa1958. That just sucks for you. I'm so sorry.
I had a bilateral mastectomy in October 2020 and would be happy to share with you what my experience was and answer any questions that you might have.
warmly,
Sharon
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Danni - just a quick message to wish you and your partner all the very best for your last infusion (YAY!) and your partner's surgery. I will be praying and thinking about you all!
Hugs,
Jo
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Jo - thank you so much, so kind of you. He just left for the hospital, early admission (6.40am here). I will go shortly for bloods and tattoos for radiotherapy prep. How are your managing the recovery? Is your last one on 25th Jan?
Danni x
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lisa1958 - hope you are out of the hospital and doing better.
Danni - Prayers for you and your partner.
It has been six days since my fourth, last and final chemo (taxotere and cytoxan) . I am so relieved. Except for being more tired, the side effects haven't been too bad. I still can't eat or drink most things but it seems to be coming back. I have a real hard time drinking anything. I think it is funny since ever cycle I had different food and drink I could tolerate. I thought it would be the same. I think I am going up now from having a few hard days.
My eyebrows and eyelashes are still hanging around - hope they continue since I heard they can fall out after your last treatment. But really I don't care that much. My hair seems to have stopped losing so much. I have about 50% or a little less but a ballcap works fine to go out. I don't think anyone can tell with a ballcap on.
I have my exchange surgery scheduled for February 1. The plastic surgeon's office said at first she couldn't coordinate with breast surgeon at the same time to take out the port since she had other coordinations that day. However I saw my breast surgeon yesterday and she said the port removal is like 15 minutes and she would be doing surgeries the same day February 1 at the same hospital and that she would work around my plastic surgeon. So I am waiting to hear if the plastic office agreed. I should hear this morning. I can't imagine putting a patient under twice on different days when they could do it the same day. My breast surgeon works often with my plastic surgeon and they lived next door to each other. I think they will work it out.
I have to get a covid test 1/27 and blood work 1/26 and sign off from my regular doctor 1/18. I hope by end of February things will be more normal whatever that is nowadays with breast cancer and covid. Have a great day! Praying for all of you. We are strong.
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Hi all,
Thinking of you and your partner today, DanniB.
I'm getting some energy back after my 3rd round of TC but still get winded pretty quickly when walking or doing stairs.
I think I already asked this here, but I'm trying to find someone else who is getting ovaries/tubes as part of their treatment plan.
Next question: Is anyone getting DIEP flap reconstruction after chemo?
Here in Massachusetts elective surgeries are on hold right because the hospitals are slammed. I feel so sad for the women who have been waiting so long for their surgeries and now have to reschedule.
Take care,
Sharon0
