Starting Chemo in November 2017
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having don rads twice now, the tatoo is a pin dot, trust me you can barely see the tiny dot, it isi used to position the machine and is needed for accuracy
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Thanks Iris, good to know. Did you have any permanent side effects from radiation?
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actually, one boob is shapped dif but that is from the lumpie, rad was very easy. A friend gave me advise in advance, watch for signs of burning and yell for docs if you see any! I yelled at first sign of pink
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hi klvans,
My understanding of the tatttoo is for the radiologist to target the spot that needs radiation. It helps line up the radiation fields so that your treatment is the same way every time. Ink was used in the past but it faded or bled and the treatment could not be exact. The tattoo itself will be the size of a pinhead. Kate.
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hi all,
Pictures of my Snowflake in her new coat, red rubber booties and purple gators.
January 9th is a popular date for 3rd rounds. If my blood work is ok on January 8th and my oncologist gives me the go ahead I will have my third round of CMF and go to an every other week schedule. I’ll have 8 treatments and the 16 radiation treatments. I’m a little worried about going e/o week but it will really cut down the time. Hopefully my body will tolerate it well. Does anyone take miralax prior to chemo? The ducolox works eventually and someone mentioned gas ex which really helped. Constipation and reflux have been my biggest problems and just generally feeling tired and unwell. So I’ll be unwell and constipated one week, better the next week and unwell and constipated and on and on.
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Thank you Iris and 19501952. For some reason I'm still not crazy about a tattoo but I'm probably being a bit irrational about it. I'll have to give it some time. There is always tattoo removal but that can be expensive.
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19501952 Snowflake is a cutie!
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klvans, make sure you talk to your radiation specialists about your concern with the tattoo. There are a lot of places that will use alternative methods still. Some people choose not to because tattoos are against their religion.
I am also a bit nervous about radiation. More because my genetic testing came back with a variation of unknown significance on the ATM gene and the ATM is known to have problems with radiation. So far, no one seems concerned because it’s a variation of unknown significance but to me that screams unknown risk. But I also have these pesky supraclavical lymph node and intramammary lymph node that need fried because they can’t be surgically removed. So, a bit of a catch 22.
I am a bit jealous of everyone that has their treatments spaced out over 2-3 weeks. This weekly taxol is really starting to beat me up. I’m very happy it’s nearing the end (8 of 12 done!) but then I start the AC portion. I’m hoping having a week between infusions will give me some time to feel normal again. I’ve also decided to take a leave from work. I was going to try and work through the whole process but I just feel like I’m doing a disservice to my job and myself. Luckily my employer is extremely supportive which oddly enough feeds into my guilt. But it’s the right move for me.
And as if I’m not just a bucket of sunshine already, I recently found out that my sister, who got her mammogram because of my diagnosis, has found out that she has breast cancer too. At first they thought it was just atypical ductal hyperplasia but after the excision and pathology they found DCIS. They believe they got it all so I am very hopeful that she will not have to experience the same thing I am. I am happy that she caught it as early as she did but sad that she has to deal with this at all. So far, my other 3 sisters have had clear results.
Once I’m cleared by my doctor, I am so taking a long vacation.
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Frozentoes- I’m amazed you can tolerate treatments weekly and work on top of that! Don’t be jealous. Even though my treatments are three weeks apart, I’m out of commission that first whole week. There’s the two days I call “flu days”, in which all I can do is sleep, feel like crap, no appetite, no taste, groggy and weak, but the rest of the week is stomach cramping, semi diarrhea or constipation and there would be no way I could work through feeling this bad. I can’t even trust or know what my body will do that first week. I’m so sorry your sister now has to deal with her diagnosis, but good she caught it early.
By second week, I’m well enough to get out some, but still very tired. I’m older than a lot of you, so I figure my body wears out faster than most. Nevertheless, it still isn’t a joy ride for any of us.
Meanwhile, to add to my venting a new side effect popped up yesterday. TMJ - my jaw was popping every time I chewed. I thought WTH - this TMJ is not a problem I ever had before - to this extent. It’s just on my left side. It doesn’t hurt, but feels like my jaw is out of line to pop like that. (What’s going to happen next - teeth fall out?) Hopefully it will go away. The other thing that is driving me nuts is my bloody nose. I constantly blow it and it bleeds. I can blame the cold, dry weather, and the Aleve that I’m trying to be careful withon that.
19501952 - Snowflake is adorable in his winter attire. I never heard of purple gators before. The things they have for pups these days. So neat - I want to get a new pet so bad. Maybe after my treatments are over, I’ll look for a new baby, but like Frozentoes, I’ll want to get away from here first on a trip.
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Frozentoes Thank you for the insight re the tattoo. I appreciate it. I can relate to your anxiety about radiation and the unknown. For me it's the unknowns that make dealing with cancer so difficult.
Like Blair I'm impressed that you hold up so well with weekly treatments. I'm on the same regime as Blair and I don't feel well the first week either. I suppose every regime is different and every person's reaction is different too. I just feel for all of us on our various courses of treatment. You sound like a very dedicated employee, hence your employer values you greatly. Please don't feel guilty about making your health a priority right now. You deserve the time to heal. Everyone does.
How rough that your sister was diagnosed as well, but a blessing she caught it early. I have two sisters and I don't want either of them to get this. We want the best for those we love. I'm sure you'll be a source of inside information and support for your sister.
Blair on my first round I had sharp jaw pain that radiated into ear pain. It wasn't fun but it went away. I bet yours will too. I hate these off the wall side effects. Give me good old fashioned diarrhea or constipation--I know how to deal with those!
A trip somewhere sounds wonderful. I'm not sure I could afford one but it's nice to dream...
Despite our travails here's to a good weekend!
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Blair, I am still struggling with dry itchy scalp too. The low humidity from this cold weather and chemo dry skin aren’t a good combo. I wash it with Arla Conditioning Shampoo (very mild recommended for chemo patients), use my favorite conditioner, rub with Thayer’s Witch Hazel with Aloe, and then Jojoba oil. I always wear a beanie, even in the house. I rub with coconut oil before bed. All my products came from Amazon.
Hope, I think you said you have constipation the first 2 - 3 days. Me too. Colace helps.
My last treatment is Wednesday and I felt bad today. Usually I feel great on this weekend 2.5 weeks since a treatment. The soles of my feet hurt and my legs ache. I’ve had the foot pain with each treatment, but it’s never come this late. The aching legs is new. I didn’t have the.hand rash this time. I agree with whoever said the SEs change every time.
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Hi Blair,
I’m stopping by to see how are you doing, Are you close to finish? So you have a popping jaw now, can’t sing. You are one strong woman, you can do it! Bloody nose, make sure to pul some nasal gel day and morning, meanwhile use nasal spray and use humidifier in your bedroom. Try not to blow your nose for couple weeks, because blowing your nose out a lot of pressure to your nasal. I learned all these from my doctor/ specialist. Send you good vibes and prayers.
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Good morning all. Day 16 > 2nd treatment.
The 3rd treatment is coming up too fast for me and probably for many of us this week. Last night, I woke up at 2 am with my back getting worse. I was hoping I could skip 24 hrs of Aleve, but took one anyway, because it is too annoying to have my back cramp, or lock to a point i can’t move but in very slow motion just to change a position of sleep. This side effect is the worst compared to the dry nose and itchy scalp. At the same time last night, I slapped a combination of coconut oil, plain healing lotion, and anti-itch lotion onto my head as it began to itch really bad. I don’t like the smell of all this junk.p on my head. I’ve noticed the burly brissels are falling out more. Maybe eventually I will have a baby butt smooth head? Oh, who knows, but today I think I’ll try rubbing some hydrocortisone cream into the red itchy areas.
Paulette- how is the radiation going? Did they recommend good creams for it? A humidifier would be good for the dry air. I had one years ago, but it broke down. There’s not a lot of use for a humidifier in FL. I used it for my daughter when she was little. I used a nose strip to help me breathe better last night. The Aleve and dry air is most likely the cause to the bleeding culprit, so that’s another reason I cut back on the Aleve. When I’m asleep, my nose clogs up with the irritated blood tissue - which then causes me to blow the bloody gory in the morning so much.
Kivans - I didn’t get an ear pain, but the TMJ magically disappeared yesterday as quickly as it came the day before. I’m glad it went away. That was a complete mystery. I’m glad to hear someone else had that happen - but not glad it happened to anyone if you get my drift.
Orangedaisy - Have you had your third treatment? You are also in the taxotere and Cytoxan combination chain gang. How are your side effects with 3? These drugs are full of dirty surprises. Heaven help us
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Frozentoes...I am so sorry to hear about your sister's diagnosis. But, like you...glad it was discovered at an early stage. Making your decision to take a leave from work is a good thing...especially, when you have the support of your employer. No reason to feel guilty.
Blair...I think jaw problems can occur with the treatment. Ask your oncologist, to be sure. I've had that clicking and it's sooo annoying. It did eventually go away. Oops...I see in your latest post that yours went away..and quickly!! Yea!! I'm so sorry you are still having so much back pain. Any chance your doctor would order a scan to get to the bottom of this?
Kivans...I wouldn't even consider the markings for radiation a "tattoo"...mine were just little dots...they fade away. The radiation was not a big deal. It took longer to put a gown on than it did for the radiation. I was given a prescription cream from the beginning to use. I never had any skin changes other than slightly pink that went away. I had a 28 treatments.
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Nonahope, I'm glad to hear you don't consider the radiation guide marking significant enough to be a tattoo. How long to they take to fade? Do they go away completely?
Blair, sorry the back pain is still there. How frustrating for you.
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Kivans...I don't really remember how long it took for them to fade. But, they were so miniscule I barely noticed them. I have nothing there now.
Hope
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Its been awhile since I posted. My AC treatments are every 2nd Friday. #1 & #2 seemed to go by with minimal side effects. #3 kicked my butt, for 3 days I was in bed. I would look at my legs and will them to move but they just wouldnt. but day 4 after treament - I am up and about, back to work like nothing happened.... so strange. WBC also crashed to a 1.0. I am on an antibiotic Levofloxacin to fight off bugs. and take Prochlorperazine (nausea) every morning (even though the perscription sasys every 6 hours) I have had little nausea. I have a 4th treatment this coming friday of the red devil and it is my last. Thank God. I then have 12 weekly rounds of taxol... finishing up April 6. Then starting 5 weeks of daily radiation. My head is bald, peeling and itchy. I use a mild shampoo with tea tree oil. I have a little fuzz that came back but doesn't grow or fall out. skin is so dry
Frozentoes - I also can not wait for all of this to be behind me. Like you ladies say, I also am planning a week vacation on a beach somewhere after all this. Wouldnt it be nice if we could all meet on a beach and have a Survivor Trip or Cruise .
Blair - Sorry to hear you are still having back pain. I asked for a scan but they just told me not yet... however, My back is feeling better. I started doing stretches applying heat and cold and seems to have worked. I do take Tylenol PM at night, and just tylenol for my back if it flairs up. I hope your side effects clear up soon.
Paulette - my friend had radiation and she dropped off to me 6 tubes of pure 100% Aloe Vera Gel. She said apply it immediately after radiation to the spot - before you leave the hospital or clinic. She said it was the only thing that helped her. I am going to use it in April when I get radiation.
At work, everyone loves my wigs and is very supportive. I actually had my end of year review and was promoted to a new position for 2018. Tomorrow, I have to fly to Idaho for a week of work. i am worried about being on the plane with my WBC so low. I am going to pick up a mask to wear and scarves to cover my mouth when I dont have the mask on. I have a new empathy for those I see wearing their masks.
19501952 - Love the pics! So sweet, and love the booties My pup, Ringo is so affectionate and loving. I think our animals know that their Moms are not feeling good. His wet nose and kisses are great therapy.
Ladies, you are all so strong and brave. I know this was not a choice for us - but we are all warriors making the best out of this situation. Whats important is that we are all here for each other and will come out of this stronger, more confident, patient and understanding. We will be able to help others whose paths cross our own. Happy New year to you all - we got this!
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Thank you nonahope that's reassuring.
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Hi, all - Sorry to hear that so many are struggling with unpleasant side effects these days. Depression is a natural reaction to all of the stuff we are dealing with and I've certainly had some blue (and angry) days lately. Need to schedule another counseling session....
Blair & Orangedaisy - If you are experiencing flaking in addition to the itchy scalp, it is possible you've developed seborrheic dermatitis. This is what I figured out was going on with me, and my dermatologist prescribed a topical steroid solution to apply to my scalp which is gradually helping it to resolve. https://www.mayoclinic.org/diseases-conditions/seborrheic-dermatitis/symptoms-causes/syc-20352710
19501952 - I love doggies and Snowflake is adorable in all of his winter gear. Thanks for sharing the pics!
I have Round 3 (of 6) tomorrow. My husband will be my cold cap helper. (I am continuing, despite the fact that I've had a LOT of shedding due to the above-mentioned scalp condition.) Cannot say I'm looking forward to it. But on the other hand, it will put me halfway through the chemo portion of this process and I keep reminding myself that that is a good thing.
Have any of you "broken up" with unsupportive friends since your diagnosis? I did so with one yesterday because I was expending far too much energy being hurt, angry and disappointed with her. I am of course sorry that we reached this point, but actually feel good about my decision. As I told her, I need to focus on my health and surrounding myself with people who are able to support me right now. I am fortunate enough to have a few of those people in my life and she is simply not one of them.
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magari- I give you props for you “break-up”, I have an ex who I broke up with months before I ever found the lump. He sends me random texts about his “emotional issues” very weird and cryptic. I am sure he is drinking, which was the reason for the breakup in the first place. I can’t bring myself to be mean, I know I need to, but it’s just not in me. But it’s so annoying for him to text me and whine about his issues. I don’t give a damn about his issues, we broke up, I have enough on my plate without his garbage too. There are a couple of people I would like to throw out with the morning trash and just say enough!
Wishing strength to all of us going after round 3 this week, I am not looking forward to starting the next two weeks all over again. But this is my halfway point. We can do this!!
Tina.
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Blair, your back acted up, do you think epsom salt bath would help to ease off some pains? As SDKB said try to do some stretching that might help some. That’s terrible to suffer all this pains plus your itchy head. Hang in there, you are closer to the end.
SDKB, congrats closer to the end of your chemo. Please keep in mind, the last chemo kick butts. Many ladies got sick after the last infusion, it hits the hardest.
I finished 20/30 radiation and skin turned red and nipple got very sensitive. My RO only wants me to use Miaderm lotion for my treated breast so I can’t use other. Sometime I put Aquaphor on top of Miaderm at night. I load up lotion 4 times a day only 10 more sessions to go. I will keep you ladies posted so you can get ready.
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Good Evening Chemo Buddies,
Just checking in. I'm 11 days post chemo # 3 and feeling somewhat "normal." Right after #3, I developed the infamous white tongue and everything tasted horrible. Something that helped immensely was drinking water diluted with a tsp of apple cider vinegar, tsp honey, lemon juice. It zapped whatever that crud was. My last chemo is January 17th and that feels surreal.
Tina~praying that this week goes well and your SEs are minimal!
NonaHope~sometime I'd like to pick your brain about radiation. That is what is next on my radar for the month of February.
Blair~I hope # 3 goes well for you this week. My SEs have all been different. The only constant is the fatigue. I pray you have a good third round.
Orange Daisy~Congrats on your upcoming last infusion! I completely hear you on feeling good at that 2.5 week mark..and, then, I hate the dread of knowing chemo is coming. Just think, after this week, you are DONE girl..and, the next few weeks will mean that you just feel better and better and not have to face chemo again.
1950-52 Love the puppy! So cute! How is your chemo regiment going? I know you mentioned methotrexate-is that in a pill form?
Frozen toes~a good friend of mine just found out she has bc. She got a mammogram a while back because of me and it made me sick when I found out. She is beginning this awful journey.
Girls, I hope you all have a good week!
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Magari I haven't broken up with anyone but I've noticed that breast cancer has changed some of my relationships. Some have deepened but others have done the opposite. My sister has been my rock and my best friend has really been there as well. My boyfriend drives me to appointments and has been pretty good but our relationship hasn't deepened. I think breast cancer has made the true depth or lack of depth come out. I'm not sure what I'll do about it. Right now I'm just trying to get to the other side of this thing. I suppose most of us are doing the same. It sounds like you did the right thing. It's hard to maintain a friendship that just isn't working under any circumstances least of all these.
I've cold capped as well but have still lost a lot of my hair. By golly Taxotere hates hair! One thing that has helped me is wearing a hairnet underneath the cold cap. I also put hairnets in the freezer and wear them after the final cold cap. It's not as cold as the cap but extends the chill for quite awhile. Seems I preserved more hair when I did it.
Orange Daisy yes congrats on the last one for sure!
I hope all of us facing round 3 do well this week.
Take care everyone.
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With reference to breaking up: I make no apologies for doing what I need to do to keep myself sane. The day I received the results of my biopsy, my friend came over to my house and witnessed myself and my husband cry and talk about how we were feeling. She is a family counselor by trade and I was grateful that she was there. A couple days later she sent me a text starting with "how are you feeling" and then a long rant about her ex-husband's crazy girlfriend and expecting a response from me. It made me realize that our relationship had always been very one-sided, that it was often all about her. I don't have the energy at the moment to deal with her so I've just distanced myself. It's not a break up, it's more of a time out that may be temporary or permanent.
My SIL who lives across the country acts like she's an expert on bc. Apparently her credentials are that she has one friend who just went through treatment and a co-worker with another type of cancer. I don't have a close relationship with her and up until the point of my diagnosis I hadn't spoken or text her in years, the only communication was between her and my husband. Since my diagnosis she's been texting and snapchatting me regularly. She is starting to wear on me. After my surgery, my husband told her what my pathology was. She took it upon herself to bounce if off her friend that has bc and came back with a point by point analysis of what her friend thought of each aspect of my pathology. I felt violated. I didn't ask for her to do this, her friend's brother is someone I went to school and university with. I have doctors, this board, and the world wide web at my disposal if I need information. I get that maybe she was concerned and wanted her friend's opinion. But hearing her friend's opinion stressed me out.
The other day, she asked me how I was doing, I said I felt fine. She responded with "I hear the fourth treatment gets harder". I assume she heard this from her friend. Like I need to hear this, like I haven't been obsessing and researching day and night about how I'm going to get through the next five months of chemo and then radiation. All I want her to say is I'm glad you're feeling ok. It's almost like she thinks I'm being too positive, posting photos of myself looking ok on social media instead of documenting step by step the hardships I'm going through. Unlike her friend, I have not shared on social media what I'm going through. Some people get support that way and that's great, but I'm a private person and have chosen not to do this. I've only shared my situation in person with some family members, the friend I talked about, and three employees. My new hashtag is #noapologies. I make no apologies for keeping myself sane by sharing only what I want to share and distancing myself from people that take away my energy, since I have so little of it lately. I make no apologies for putting my health first, both physical and mental. It is my choice what I choose to share with my SIL, and if she wants to help she should just be supportive, instead of assuming I'm in denial and that it's her job to bitch slap me into reality.
Sorry for the long post, I guess I've been bottling this up for awhile. Oh wait, #noapologies lol.
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Aymerz33- This is your final infusion today! Kiss it goodbye forever! Yea!
Rljes - are you ready for your 3rd tomorrow? Did the Jeep get fixed and have you felt well enough to get supplies? Hope you’re ok. That hip and bone pain sounds as bad as my back. So aggravating.
I try my best to keep up with everyone here - so many of us! Thanks for all good wishes. The cold weather isn’t helping at all. Yesterday I was totally worthless. Just tired and felt cold all day. I’ve had my heat on where I normally keep it, but just felt cold and tired. Napped twice. The good news is I skipped taking some Aleve. The back pain is still there, but as long as I can move without it snagging at me, I’m good. I’m going grocery shopping today, so it will test my back pain. I might take a pill before I go. Standing too long gets to my back just like sleeping in same position too long.
Oh Magari - the hydrocortisone cream seems to knock out the scalp itching for a few hours. I don’t think it smells as bad as the coconut oil does, andmy head is less red this morning. It’s itching a little this morning, but not as bad. The Mayo clinic said one could use hydrocortisone cream (preferably prescription) for it, so if it keeps up, I’ll ask OM for a stronger cream. Thanks for that link.
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Magari...A big thumbs up for breaking up with your friend. Negativity is not what we need at this point.
Lizabeth...Like I've said, for me radiation was a piece of cake. It was tiring because it's a daily trip to the facility. but, absolutely no big deal to stress over.
sswp...Glad you were able to vent. It was much needed. Some people just don't get it.
Blair...Happy "pain free" shopping today! It might be a good idea to take an Aleve before you go. I have to drag groceries in through the garage, up the steps into the house and I find my aches are a bit more noticeable after that shopping trip. Good luck.
Wishing all a good week. This is my "off" week for Taxol.
Hope
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getting used to this nasty stuff, guess seeing my hair grow back on this meed, it fell out whileon taxol butn on this new med it is coming in again.....yahoo..... then again not yet doing scan to see if the dang stuff is working so who knows
Fortunate enough to have a bunch of gym pals, some who have been through all this themselves
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Thank you Blair2! I am celebrating and anxious and stressed! What a flood of emotions! I can’t wait to kiss it all goodbye! Peace out Chemo!! Time to get back to life
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Iris...Do you know when you are getting a scan? Are you having any bad side effects from this oral medication?
Aymerz....Congrats! The end is a time to celebrate!! I wish you the best in the future.
Hope
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Aymerz, I join the others in wishing you well on your final chemo. That's so wonderful!
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