November 2019 Chemo Club
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Me too! Radiation is pretty easy, but I' having some sort of rebound effects from chemo. I have neuropathy and pain in my hand and arm at night which is keeping me up and aches and pains throughout my body that I didn't have during chemo. I'm afraid radiation will make it worse. And today my throat feels swollen and I have a headache and slight nausea. Won't be the cake walk I hoped for.
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jrnj.... I hope things will get better for you! Is your arm and hand pain On your right side? If so, is your arm swollen at all? I have Grade I lymphedema and it hasn’t gotten worse with my treatments so far. I have had 14/20 and today develop a rash on my breast , which is common..... itches like crazy but I don’t dare to scratch it. I have my weekly appt with RO tomorrow, so will see what she says.
Eigna yay!!! Happy for you getting started!
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Margo, yes right side. I don't know if it's lymphedema or neuropathy. RO thinks neuropathy. I haven't called MO yet. Pain and numbness really bad at night. Vicodin didn't work. Ibuprofen works a little. I keep waking up and readjusting position (and sweating). Also pain in right side and ankle and some neuropathy less severe on left hand. Wierd thing is I had these pains on same spots before surgery but less severe and they went away after surgery. Def think it is related to a nerve in cancer area. It’s really getting to me had breakdown yesterday. Any advice?
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it sure sounds neuropathy related.....your arm would be swelling if it was lymphedema...I take b6 and Gabapentin for neuropathy, which comes and goes for me. Hang in there....maybe a call to your MO
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Margo. Been meaning to call MO but wanted to see if I could manage it with ibuprofen and b complex. RO said drug side effects are bad. Do you have any side effects from Gabapentin?
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I met with the RO today and had my markings and CT done. I go for my dry run on the 10th and have my first of 33 radiation treatments on the 13th. When I was in the CT machine, I started crying. It’s like everything that has happened the past 6 months just came pouring out of me. Will we ever feel like this is over? We are all warriors and we are all going to win the battle, but ladies, OMG, we had breast cancer!!
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Amyhey, happened to me yesterday, broke down. I’m sick and tired of it. But hoping we’ll feel normal again some day. ❤️
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Amyhey - I broke down on the way home after my dry run of ct scan. And yesterday too before starting my first treatment. We’ve been through a lot. What can I say. We just have to keep on going.
Margo- I have some sort of swelling around the elbow area. And when I touch it I have some minor pain. Is this lymphadema? Or cording?
Day 2 of 20 done ✅!
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Hey everyone! How's it going for you all? What a strange turn of events in our lives over the past month. I hope you are taking care of your mental health through all of this with your treatment piled on top of everything else. I am doing pretty good. Today is day 6 of radiation treatment and so far so good. I am actually enjoying the drive most days. Traffic is light and I always get a parking spot so that's one good thing at least. I am not experiencing any side effects (yet). My taste buds still haven't returned fully but that doesn't stop me from eating large quantities of "kid food" like Hamburger Helper and beans and wieners. I miss salad but I will have to wait until my grocery list gets long enough to make it worth the trip to the grocery store. I am still experiencing numbness in my finger tips and toes from Taxol. I hope that goes away soon. My finger nails are discoloured and most have broken off. No hair regrowth yet. It's a good thing I won't be one of the masses in line at the hairdresser when things get back to normal lol. Other than that, I have found my sleeping has become much more restful for some reason. I have always been a good sleeper but I no longer have the fatigue that accompanied chemo treatment and now just sleep regular hours and wake up refreshed.
I hope you are finding things to be grateful for or at least ways to cope. Stay well everyone
Charlie
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Hi Charliebug, we seem to be at the same place physically and mentally on some things. I kind of don't mind going to radiation, it gets me out of the house, and everyone is nice there. My taste is still off, which sucks, but I'm still eating a lot and gaining weight. I'm tired of feeding people in this house, not take out! I developed neuropathy numbness and pain after stopping chemo, mostly in right hand and arm, but some in left hand and right foot, Left foot is fine, lol. Ironically, I have aches and pains all over from chemo rebound that I didn't have during chemo, The chemo actually helped them. I read my type of chemo is given to treat arthritis, which I didn't know I had, but I think I might. Radiation made me pretty tired last week. Yesterday my RO gave me a steroid for the arm pain, because I told him I was taking a lot of ibuprofen and he didn't like that, but he didn't offer it last week when I told him I was in severe pain. I do feel better, but I am a little wired now, so it might interfere with sleep tonight, which he warned about. I MUST have my sleep to function, lol. I sleep 10 hours a night, with a few bathroom and sweating, change clothes, breaks. I also have swollen throat, which I read is from scatter radiation, but RO refused to believe it, said It must be from laying on the flat table. SO tired of Drs. dismissing my side effects. Overall, we're doing much better than a lot of people, I am grateful for that.
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Hi all! Happy Easter weekend! I’m going in for my dry run today. I have no idea what to expect, even though I’m sure they have explained it to me! I have always had someone with me who can help me remember things when I meet with doctors and surgeons, but because of this stupid pandemic no one can go with me. I am actually looking forward to having somewhere to go for the next few weeks while we are stuck at home! Oh, my eyebrows and eyelashes JUST fell out! I kept looking at myself in the mirror trying to figure out what was wrong with my face! I found out that a sweet lady who brought food to me during my chemo was just diagnosed...it broke my heart. Is everyone going to get breast cancer?! Where is the cure?! Hope you and your loved ones are staying safe and healthy!
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JRNJ- it sure does sound like our experiences are very similar! Sorry to hear your doctor(s) are so dismissive of your concerns. I think sometimes we all need to really advocate for ourselves with medical professionals and insist they hear us when we tell them things. There's only so much we can do though. Unfortunately our lives are largely in their hands during times like this. Has your arm pain improved at all over the past couple of weeks? That sounds awful! How is radiation going now?
Amyhey- it is so sad and difficult that nobody is allowed to come with us anymore. I hope your dry run went well. How is radiation going for you? It does seem like so many people have breast cancer. We, of course, are highly sensitive to hearing about it given our own diagnosis I'm sure. It is so sad to hear about someone you know who has been diagnosed. I used to think there was some kind of conspiracy with BC fundraisers and so much money being poured into research with no cure forthcoming but after going through this, I now understand that there are just so many variables to how treatments are done- even when two people have the exact same diagnosis, the treatments can differ so much depending on different things. It's just so hard to pinpoint the exact way to treat different people. Things have come a very long way though, even over the past 10 years. The anti-nausea drugs are amazing now compared to not long ago. There are options available that were never there before. We still have a ways to go but I am hopeful for a cure.
My hair is coming back! I have a layer of peach fuzz on my head and I can see where my eyebrows are again. I get tired of wearing my toque sometimes as I am finding it itchy and hot so I find myself going out sometimes forgetting to put it on. One advantage of COVID is nobody seems to bat an eye at weird hairdos right now lol. I think people just assume I got tired of shitty hair and shaved it off.
So only 4 more radiation treatments to go and I am done. It seems to have gone by so fast! I have no side effects yet so hopefully they don't show up in the last few days of treatment!
Stay well war buddies...we're almost there!
Charlie
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Hey y’all! Hope everyone is well and staying safe. I finished my Radiation on April 8. I had 4 boosts for the last four treatments. I had no side effects at all until the last week and then began to have a severe sunburn. Then peeling....pain and soreness lasted about a week.
They recommended a product from Amazon called Lindi Skin Cooler Roll. I think it helped more than anything . But I was told to continue with Aquaphor, etc for another month. Then get to start AI for 5 yrs. Anyone else near the end of RADS having side effects?
I had to stop with PT for the mild lymphedema I was having due to COVID. It seems to have stablized without compression. I couldn’t do the compression with my sunburned axillary area.
Eigna.... is your arm/elbow better? I think cording is more underneath the arm and looks like cords or rolls and is hard.Hope everyone has as good weekend a weekend as possible.😄
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JRNJ.... sorry for not answering about the Gabapentin..... so far no side effects. I did leave it off one night and my foot hurt worse during the night .... one foot neuropathy is worse than the other. Walking has helped . Are you taking Gabapentin
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I'm feeling much better on the steroids (Dexamethasone.) I skipped a day and the pains started to come back, so that is concerning because you can't take steroids forever, but one day at a time. My Dr. never mentioned Gabapentin, and I didn't ask because the steroids are working. I wonder which medication is better? Less side effects? My taste buds have recovered mostly and I am eating even more and gaining more weight. It's exciting to enjoy my food! Radiation if fine. The steroids are also giving me more energy so I'm not as tired as the first week. I have thick oliveish skin, so no serious burning yet and I just finished 3 weeks. I am doing 7 weeks, at a lower dose. I actually enjoy the social aspect of the radiation, crazy! The nurses are very nice and I am in a waiting room occasionally with a few people. I met someone who is a former homicide detective, had DCIS previously, mastectomy, no chemo or radiation, now has bone mets and has 2 kids under 5. So sad. I think the system is messed up that they do radiation automatically for lumpectomy, but not mastectomy. Glad my RO recommended radiation for me.
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Hello everyone! Sorry if I haven’t posted anything recently but I have been busy with my kids homeschooling them: virtual classes to attend, homework etc. I’m at radiation treatment no 15 of 20 today. I look forward in going everyday just to get out of the house. Never thought I would say this. Side effects are minimal so far. A bit of a sunburn.Hopefully I can last another five treatments .
Margo - my arm is better. I think I had exercised it too much. Pain and swelling has gone away. I’m being careful now.
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Today was my last day of radiation and therefore last day of adjuvant treatment. I am done! I understand the peak side effects from radiation will hit in the next 7-10 days so we'll see how bad that gets. Right now I feel a little tired and there is a pink rash on my boob but no other effects so far. Will update with that but, in the meantime, I hope you're all well and I am off to celebrate my last day of treatment with either a cup of strong coffee or a nap...not sure which yet.
Take care!
Charlie
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Congrats Charliebug!!! You did it! I have 4 treatments left and I am very emotional with everything that is happening. It’s been a long journey.Let us know how you are doing in the next few days.
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Charliebug, Congrats!!! Yesterday I tried some caffeine and steroids and still fell asleep for a nap after, lol.
Eigna, Sorry you have to deal with homeschooling too. Mine are 12 an 14 and I pretty much left them on their own lol. I'm spending all day feeding them and doing dishes!
I just finished week 4, have 3 more to go and I am starting to get pretty red under my arm. To my surprise, they are going to take out my ovaries for AI treatment end of May, I thought they would delay. They will move me to a hospital with less Covid cases. I'm not sure whether to be happy or scared.
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Hello all, I made it. I completed radiation treatments. Cannot believe it. So many emotions.
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Yipeeeeeee!!! Congratulations!!!!!
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Congratulations Eigna 🎉🍾! You made it! Do you have any burning or soreness? Mine seemed to worsen the last week of RADS and went on for a week, then the pain stopped. I’m still having some peeling though.
What kinds of cream or ointment do you use? I was told to continue mine for a month. Do you I have to start on an AI? I start on Letrazole next week.....dreading that so much.
Hope everyone is staying well and safe these days.❤️
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Hi Margo! Thanks 😊
It’s a little bit sensitive and a bit red under the breast but not peeling. Sometimes I have also some itching feeling but it goes away. Doctor prescribed a cream when it starts peeling but right now I’m ok. What I am putting right now is Cavillon spray twice a week. And I need to continue it for two weeks after treatment unless I need the prescribed cream. After that I need to apply a moisturizing cream for 1 -2 months.
I will have to take tamoxifen as I am premenopausal. I also dread in taking this pill. I already consulted three different doctors and they all advised me to take it. I will see my doctor in two weeks and will decide then.
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Hi everyone! It's been a while since my last post so thought I would update. I finished radiation on April 23rd and, unfortunately, the fatigue hit me a few days later and lasted about 10 days. It seems to have completely lifted now and my skin is peeling but not cracking and it doesn't bother me at all. I had a phone appointment with my oncologist on Tuesday and she has cleared me to return to work June 1st. I am actually excited to get back to work and have some semblance of normal even though I will be working from home so, in effect, not much will change except having a good paycheque and something to do for 8 hours a day (what a change that will be!).
My hair has grown about 1.5 cm and my eyebrows are back. I have eyelashes again although I hope they keep growing as they are still quite short. I haven't been wearing a hat or anything on my head when I go out as I find it too hot and itchy. I find nobody even bats an eye at that. I think perhaps they think I have a "COVID cut" lol.
In the meantime, my fiance sold his house (it sold in less than a week after listing) so we will be house hunting very soon. Hopefully we can find something we like before too long and we can move forward with getting that done before summer is over.
I hope you are all doing well and staying sane during this strange time in our history. I look forward to your updates!
Stay well.
Charlie
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Congrats Eigna!!
I finished Friday. The last 7 treatments were scar only. My redness and blistering is almost gone already. Charliebug, We do have a lot of the same milestones. I also go back to work 6/1, dreading that. I think they are still working from home, which is will be hard to adjust to, but glad I don't have to commute. And my Dad is selling his house, so I went there 3 days last week to pack stuff. Good Luck with house hunting!
Radiation was pretty easy, and I actually enjoyed the social aspect of it, BUT, I have a lot of aches and pains throughout my body, that I didn't have during chemo. So its either still recovering from chemo withdrawal, statins, arthritis or some other kind of inflammation problem or metastatic cancer, yes that's my anxiety talking. And my bone scan came up as Osteopenia. They told me to just take OTC Calcium and Vitamin D. I decided to postpone ovary removal til August and get a Lupron shot, should be next week, then Aromosin. I actually postponed, so I could be home with my kids at the end of August, but used Covid as an excuse.
I don't have any burns in my armpit area and the hair is still growing. I am having a panic attack over this as I'm afraid they didn't go far enough. Same anxiety I had when they didn't take enough nodes, I thought radiation would cover it. Anyone, Did your radiation burn your armpit?
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Hi JRNJ! Congratulations on finishing! I have 5 more treatments. My last 7 is scar only, too. As far as aches and pains, It is so painful every time I go from sitting to standing and when I walk. My feet feel like I’m walking on sand and my hands go numb throughout the day. I also am growing hair under my arm, but the area they are radiating is lower than where my hair grows. I see my oncologist on June 3 for the bone scan and to start the Letrozole. My friend had to switch to Tamoxifen because she ached all over with the Letrozole. I’m pretty afraid too and I’m sure it’s normal. Will we ever feel safe
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thanks for the feedback Amy. Do you think your aches are from the chemo? I had them before dx, I think from statins, but not sure. My hands go numb at night, that's new for me.Sounds like our radiation is in the same spot. he told me it goes in at an angle and “We've got you covered" but I'm the eternal skeptic and have found mistakes by drs a lot. I don't feel safe. He told me my hair wouldn’t grow.I feel like if hair can grow so can cancer. I’m a freak with ocd. can’t let these things go.
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Hi JRNJ I had numb hands at night. Pain and burning sensations as well I thought it was from Chemo but doctor said it wasn’t from Chemo. He suspects carpal tunnel syndrome for me but he needs to see me first to diagnose me. I went ahead and bought a wrist brace which I wear at night and my hand is not numb anymore! I’m also try to rest it no texting etc and I see a difference.
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Hi Eigna, That's weird. I don't believe it's not related to chemo at least a little bit, but I'm the eternal skeptic. Mine hit with a vengeance 3 weeks after chemo ended. It's not as painful anymore, but I still wake up and both my hands are numb. I bought a compression glove, and that didn't work and was torture. Is the brace loose but stiff? I have a rollerblading wrist brace, maybe I'll try that, but may be more uncomfortable than the numbness, lol.
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Hi JRJN , My symptoms showed up three months after the end of chemo. Maybe that’s why the doctor doesn’t believe it’s relatedto the chemo. I felt numbness and burning sensation only when I was lying down for a long period of time. Only the right hand. This is what I bought from Amazon:
https://www.doctorarthritis.org/product/carpal-tunnel-wrist-brace-single-dr-arthritis-handbook
Hi wear it at night mostly and I don’t feel any more numbness.
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