Starting Chemotherapy March 2018
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yeah can someone get my wig for me. I’m just not into it and I will need one 😕
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Hi all I start my chemo next Friday, I also have my ecg first then chemo then oncologist meeting. Can anyone tell me does everyone get a port? As no one has mentioned this to me.
My treatment is once a month for 6mths then 6mths once a week.
I had my mastectomy 30/01/2018
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The only reason I'm getting a port is because I'm getting Adriamycin. There is a risk that this medication may leak out of the vein at the injection site, resulting in tissue damage that can be severe (severe local tissue necrosis will occur if there is extravasation during administration).That risk is minimized if the drug is given through a port.
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Hi SnowQueen, welcome! I don't feel like wearing a wig either. My husband wants me to have one "just in case" because he wants me to be comfortable. I still think I'm just going to be bald a lot this spring.
t.butstillHopeful - I was offered something for nerves - maybe that will be an option for you too! You can always ask ahead of time if it will be available. *hugs* Just hang in there. You can do this.
Tracy, is there a resource at your doctor's office or cancer center from the American Cancer Society? They may be able to help you pick out a wig and even supply one for free. That could be something to look into. Doing it on my own is daunting. I feel ya!
Miss-Flint, welcome! I know that not everyone gets a port, and some people get one after their first treatment. My doctor said, if you're going to get this many treatments, you will want a port. Depending on the type of chemo, the medicine can be tough on your smaller veins. And even if you don't get that kind, they still have to poke you and find a vein every single time, which is rough.
My friend who has been through this before said she got a port after her first treatment, and she wished she had it earlier.
My update - had the first chemo treatment yesterday (A and C). The process was slow, a lot of waiting, and the nurses were nice enough. I felt fine afterwards but in the evening started to feel queasy. I have three different anti-nausea meds, and I'm supposed to take #1 and wait 30 minutes. If I don't feel better, I'm supposed to take #2 and wait 30 minutes. If I don't feel better, I'm supposed to take #3 and wait 30 minutes. If I don't feel better, I'm supposed to call the on-call doctor. Everyone emphasized to me over and over again to take the meds if needed - don't try to push through it, and you shouldn't get to the vomiting stage.
So last night I took #1, waited 30 minutes, took #2, and waited 30 minutes. I still felt a *little* queasy but decided I was "better." An hour later, I didn't feel much worse, but I suddenly got that "I'm about to puke" feeling and sure enough, I did.
Lesson learned! "A little queasy" means it's okay to take the meds. The worst part was trying to replenish some of those fluids when I didn't feel like eating or drinking much.
I feel fine now, though! I hope everyone gets to do something they enjoy this weekend!
love,
paisley0 -
Hi SnowQueen, thinking of you on day one of TC - hoping it has gone well for you. I am now Day 3 - doing pretty well so far. I have been over-hydrating, if that is possible, but it does seem to help a bit. Every nurse has said that really makes a huge difference, so I endorse their advice.
Hoping port placements work out for everyone who is getting one. TerrifiedBUTstillHOPEFUL I sympathize with the drain issue!! I honestly think the drains freaked me out and make me more uncomfortable than anything else - at least at the time. But the day even the first one comes out is like a celebration - and when the last one is out you'll be really relieved. Hang in there!
We are all getting through this together - thanks to each of you for sharing, for caring, and for the honesty. Big Saturday hugs to all!
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Hi everyone! I am starting chemo on 03/14. I am scared to death but, I am resolved! Is there any one thing that you wish you had done before starting? What diet are you following
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Hi Whatajourney, and welcome! I was pretty scared in the days leading up to my first treatment, but it wasn't as bad as I'd feared. I wish I hadn't had *quite* so much to drink that day - I think nerves were making me drink extra water. The big thing I would have done differently is take the anti-nausea meds a little quicker. It can ramp up really quickly.
I'm hoping tomorrow is the day I get my hair cut short. I'll post a pic if I can
love,
paisley0 -
I'm hooked up to Chemo right now - so far no effects. I thought the port surgery was more painful than the lumpectomy; apparently the port is sutured to the muscle to keep it from flipping and that is what is causing most of the pain. I'm also trying cold cap therapy; the first 15 minutes were intensely cold but now it's do-able.
My lumpectomy was a little over a month ago and I've had some swelling but it seems to be lessening. Based on the tumor locations, I'll not need reconstruction surgery (yeah).
My best to everyone; we'll get through this.
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Welcome Dumbo,
Welcome to the community. We are glad that you reached out. Good luck with your chemotherapy. Keep us posted and let us know if there is anything we can do to help you to navigate the site.
The Mods
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Hi Dumbo,
What type of chemo are you doing?
I wasn't offered a port as I am having six doses only. Can get a PICC line if my veins get too hard to access but I believe the line can present its own risks. The port sounds the way to go but not offered here. If the regime was to change to more frequent or more doses it would be an option.
At this point with one down and 5 to go I hope my veins hold out.
Good luck to you and take it easy over the next few days.
PS. Good people on this forum
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Welcome to our new community members! Whatajourney - the day of my infusions I had not just water but a few cranberry juices over a lot of ice, and that really seemed to help with the hydrating and a good taste in the mouth. Pure cranberry is better than the cocktail kind, but both are supposed to be helpful in your kidneys flushing out as quickly as possible. I also took a walk later that day - moving around felt really good after sitting for several hours.
Helenlouise - I opted not for a port as I am only having 4 infusions - now 3 actually since the first is done. They did check my veins in advance, and I usually don't have issues with IV anyway.
I am now Day 6 from the first infusion last Thursday - I would say that afternoon/evening Day 3 and then all of Day 4 were my "bad" days - not terrible but achy, tired, and feeling very flu-like. Yesterday I felt pretty good most of the day, then got tired and achy again last night. I asked my girlfriend who went through this several years ago - she said that your "bad" days are fairly consistent so you can plan around that for the next time. LOL it seems many of us do this so the bad days are on the weekend!
Ladies - one question. We all have things to do in between these treatments. Has anyone had good tips on what to avoid/not do specifically? I was told to get out and about but avoid crowded areas and enclosed spaces. Anything else you might be hearing?
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paisleypie Thank you *hugs* to you as well... Hope all is well after your first few days of chemo... 3 meds for nausea/vomitting... another reason I am afraid to do chemo! So, would you say to not wait the full 30 mins to see if you need to take the next med? I am still so very anxious about this port thing... I still have my drains in and was thinking if it would be so bad of me to reschedule the port placement because I at least want a week without drains... maybe I will be "emotionally" ready for the port then. BTW, were you able to get your haircut?
Wildcolonialgirl I think I will feel a little better once my drains come out, too... With them in, and on my 3rd week, I have just been such an emotional wreck! Do you also have a port?
I am hoping everyone on here is having a great day... It's awesome to see everyone's posts!
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Hi Ladies
Today was my 1st chemo treatment.
Altogether I was at the Center for about 6.5 hours.
Port access did not hurt at all- 1 slight pick and it was in- I had used a lidocain cream- best thing ever.
No issues with the premeds or the actual chemo or Herceptin.
A few points :
Ask MO for numbing cream to apply 1 hour prior to appointment
Ask what they are using and what side effects you should watch out for once they start a new bag
Drink lots of water, juice, etc
If they do not offer lunch make sure to pack one..6 hours just on crackers or granola bars is hard
Get up and walk around .. they can unplug the pump and it will run on battery power...great for bathroom breaks and just to get moving instead of sitting
Do not bring too much stuff..I wanted to be prepared and brought too much..
Do bring : A book or Kindle. Travel pillow. Gum or hard candy. Eye drops for dry eyes. Lip balm. Biotene mouth wash. Hand lotion. Charger for cell phone. Note book and pen. Pocket calendar.Your anti nausea meds.
Good luck to everyone just starting this journey
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Thanks everybody for the tips.
I like the idea of cranberry juice and will make sure to pop it on the shopping list. I think being well hydrated is really important for accessing a vein and, as mentioned, moving the chemo thru the kidneys.
Good luck everyone
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Hi ladies!
terrifiedBUTstillHOPEFUL - I opted not for a port, as I only have a total of 4 infusions and one's already in the books. But some of those decisions are governed by the type of chemo one gets, so it's not always an option.
One side effect which is a later arrival for me - starting late last night and through this morning, really bad lower back pain/spasms. After a few hours up and out this morning (went for a drive) - it seemed to ease up a bit. I spoke with my onco nurse and she said it's likely the Neulasta, and this is not totally uncommon. She recommended heating pads, warm bath, and painkillers. Next round I will likely stay on the Claritin for several days - it's one of my go-tos during allergy season anyway. I wasn't really having much pain so I had stopped on Day 4 - lesson learned
Aside from that, some bleeding from the gums and nose with blowing. Biotene rinsing is helping and I am putting some Neosporin in the nose (another weird thing I do during allergy season anyway).
Hugs to all!
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Hello, I am starting TCHP on Monday 3/12 and I will be trying the Dignicap treatments for my hair. Tomorrow morning I have a PET/CT Scan followed by a port flush and blood test. Friday my husband and I will meet with my doctor to review the results of my scan and labs and then we meet with the chemo nurse for education and a cap fitting.
I am just praying so hard for no surprises on the PET scan, I just don't know how much more bad news I can take. Trying to stay positive and I'm honestly ready to start fighting back--I feel like I can feel my tumor growing.
I had my port placed about 10 days ago and it was really uncomfortable for the first week, but now that the swelling is down it isn't too bad. I have bad veins so I'm sure I will be glad I have a port. It will be accessed for the first time tomorrow for the PET isotope so I'm hoping the EMLA cream works!
I've been reading some posts here and I am really glad to have and share support with all of you. Hugs and strength to all of us.
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Hi Everyone,
Chemo starts Friday, and trying to get ready--so last minute!! Decided to try cold caps to not lose my hair, and could use some feedback.
I've been reading and trying to learn from the community ever since I was diagnosed with bc, and just joined. There is so much wisdom, great advice, and caring shared that I want to acknowledge that and my appreciation. I am starting this Friday 3/9, am.Chemo? Taxol weekly,for twelve weeks with Herception to finish out the year. I've been assured that this will be easy, won't interfere with my work..and."will just be a little fatigued"...I'll see and am hopeful. It does really help to read suggestions on what to do to deal with the chemo-so thanks WestCoastGal and Hobby Horsed..:)..and all.
Hair--lot's of dilemmas, agonizing for weeks about what to do, or not, about hair loss. My hair is short-so I can't have a wig made out of it; it's thinning already so not that great anyhow. I went to a wig shop that specializes with cancer patients- so I might buy a wig. I never did hats and scarves, (not comfortable to admit "being treated for cancer" at work,) so it is not natural to dress up that way. I am going to a class "Look Good, Feel Better" so may try scarves after, etc.
Getting the cold cap kit tomorrow, but haven't arranged to get the dry ice yet I need for it..hope I will be able to do so tomorrow. I was told to 'ice' my hands and feet to help avoid neuropathy developing--is anyone icing their hands and feet--how does that work? Dumbo if you get a chance to read this how is the cold caps working for you and is it complicated--is a lot of help needed? Any suggestions or feedback would be much appreciated.
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Hi all, this is my first post! Just found out yesterday that I will be getting chemo, which is a total shock as I had been told all along that it is unlikely. But my Oncotype came back at 26 and here I am! Will be starting sometime the last week of March, just not sure of the exact day yet. I am a counselor at a high school and we'll be off on Spring Break that week so I figured it would be a good time to start (just not a very fun way to spend Spring Break!)
I get my port put in next week.. they will be calling me today to schedule. Doing 4 rounds of T/C. Chemo was always one of my biggest fears, but now that I know it's inevitable I am feeling a little calmer about the whole thing which is a bit strange. But I'm sure I will go back to feeling anxious as it gets closer! I currently have very long, thick hair and shudder to think of losing it, but I already decided I will get a nice wig (at least to wear to work so I don't freak out my students.. lol) and my hubby kindly offered to shave my head for me at the first sign it starts to go. I am 43 with two young kids (7 and 1) and don't want to have any regrets in the future from not having done everything I could to fight this. Everyone here seems so supportive and I look forward to hearing about your experiences and battling this together!
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hi everyone, I'm almost at the end of week 2 of my first cycle of FEC (three week between doses)and I am happy and surprised to report I am feeling pretty good. The headiness has abated. My mouth is a tad sore, coated and my gums bleed if I am not real careful when I brushing my teeth. I get the odd ache, pain and if I stand to quickly I have gotten dizzy a couple of times. Tired some but as I am not working I can take my time and rest as required. Sleeping is hard some nights. I just get wakeful at odd hours. Nails are horrible but that is mostly because I have had SNS removed (no manicures no false nails was the direction). Constipation is an issue for me but was prior.
Have my own wig on order and have bought some fabric and learned how to tie a head scarf. I am keeping a journal and record my temperature each night. I even looked up 'is the chemo working if you get few side effects?' Thankfully it appears there is no relationship between side effects and how well or otherwise the chemo is working.
Having said all of that, last week I do remember several times thinking oh dear I have 17 weeks of this to go.
So I do wonder how the next round will be. Regardless I am making the most while I feel good. I have a friend who reminds me when I need it - another day done!
May your treatment go quickly and your side effects be few.
Wishing you all the best.
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Greetings, fellow travelers. "Meeting" you all is a one of the perks that come with our diagnoses.
Next week, I'm scheduled for ChemoTeach, a PET scan, head scan, echocardiogram, and port placement (on the 16th). Chemo to start on March 20: 12 weeks of Taxol/Carboplatin weekly followed by 4 treatments of Adriamycin/Cytosan (one every two weeks), for a total of 20 weeks. That to be followed by surgery, etc.
I'm triple negative, stage 2, with an extremely aggressive nasty thing growing by the second, so chemo comes first.
Feeling overwhelmed by the whirlwind of tests and procedures, and haven't a clue how to plan for chemo yet. Hopefully, ChemoTeach will help with some of that.
On top of that, my surgeon wants me to follow a low glycemic diet because my kind of tumor apparently lives off of insulin. I've been vegan for a fairly long time, and think my diet has been healthier than that of most people, but I admit to being unduly friendly with sugar. Dang. Couldda, shouldda, wouldda if I'd known. She also wants me to avoid fake meats, which have been among my best friends. So, in the midst of all these other things to think about, I need to revamp my recipes and find new ones, and have no idea if I'll even have the energy to cook.
She also wants me to get in 5 hours of aerobic exercise per week in addition to the walking I normally do. It'll have to relatively gentle, of course. We have a rowing machine, so that's what I'll probably use. But it's one more thing to try to find time & energy to do.
I see conflicting information about hair -- like the cold cap versus a warm, snuggly hat. I live in Arizona partly because I HATE to be cold. Is the cold cap worth the discomfort? At 70, I'm not crazy about my hair anyway. Should I cut off my hair next week?
Can anyone tell me about the cold hand and feet things? What are they called? Where do you get them?
So little time to get all this figured out. (Just realized I need to alter my profile because I had inadequate or incorrect info initially. Off to do that.)
Hugs to all.
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Hi, just popping in to say hi from the Feb threads. I had my first infusion in Feb, 2nd just yesterday.
Wanted to wave to you sillyoldrabbit - I'm a fellow vegan. I too have been trying to revamp to more whole foods and less processed but I have definitely not felt like cooking anything at all. So I'm cutting myself and my family some slack. One thing at a time - chemo will do its thing now, we can tweak the diet even more later.0 -
Moth, everyone knows vegans don't get cancer!
I really, truly believed that. May I ask how you're managing without cooking? I'm thinking of maybe keeping a crockpot of beans going. That should be easy enough. Rice and quinoa are easy. Salads are easy. If I can get my husband to help chop veggies, big pots of soup might be easy enough. I wish he could cook, but peanut butter and pickle sandwiches are about the extent of his repertoire. If my doctor hadn't so strongly warned against processed foods, I could easily live on Gardein products. Green smoothies for breakfast might be easy enough. But will these foods still be palatable after chemo? Have you noticed any changes?How are you feeling on the Taxol? That's what I'll be getting, too, but along with Carboplatin.
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sillyoldrabbit - I'm just getting the A/C right now. Nothing tastes 'right' but very few things have tasted bad. Mostly things don't really taste of anything, honestly. I think foodies suffer but I'm really a boring food person to start with so I haven't really cared much. Biggest change is that I am not that hungry but I just eat like I always would. Water doesn't taste good so I switched to a sparkling water and that's been fine. Spicy things are also kind of varied. I normally eat a lot of Indian curries but have been cutting back on those. I had a few mouth sores so really spicy or sharp things (like crusty artisan bread, my favourite!) are out.
I can't have fresh veg because I got really bad neutropenia (complete with fever and 4 nights in hospital on iv abx) so all my veg & fruit have to be cooked/steamed. Green smoothies and gardein are normally in heavy rotation here too LOL. My dh cooks (but he comes home late & his cooking is all Gardein or Yves or Field Roast etc) and my 2 college kids live at home with us and they make dinner one night/week or more but what we get varies. I'm hoping that between them they'll do some batch cooking this weekend and stock up the freezer.
I had the gardein chkn last night with garlic mashed potatoes and lightly roasted broccoli and cauliflower.
Today dd made me up some 'chickpea of the sea' - it's like a tuna salad replacement & keeps in the fridge for a few days, & she cooked up a pot of potato soup.
falafels are fast and easy & I've found some ready made that are quite low fat & have few ingredients so they seem good & not really terribly processed; vegan homemade tzatziki on top. Roast peppers instead of fresh.
I try to do a big batch of tofu scramble and keep it in the fridge. It again lasts about 3 days & I have it in wraps or just plain with toast.
marinated tofu cubes are also fast & easy & don't require much standing around at the stove.
oatmeal w/ microwaved blueberries every morning, soups, stews, curries, pot of cooked rice or potatoes or pasta ready in the fridge and lots of frozen veg that I just toss in the oven for 20 min; I'm ok w/ reheating stuff but I'm not chopping or standing around to cook things
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Hi I also started chemo on March 6 and this is my first post. I'm sorry that it coincided with your 50th birthday. My 50th is April 20. How are you feeling?
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Hi March ladies,
I started chemo in February so I usually post on that thread, but I keep an eye on the January chemo thread for useful advice from women who are a little bit further along. It really is a wealth of knowledge and worth looking at. I also coldcap and would highly recommend the thread for coldcappers “Cold Cap Users...." for anyone using or considering coldcaps. Everyone on that thread is so helpful with questions and support.
Chemo certainly sucks but the support on this forum is amazing. We WILLget through this and back to our normal lives.
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This is my first post. I have been reading post on this site since I was dx and it has been extremely helpful. I have my first Chemo on 3/16/18. I am trying not to think about it. Unfortunately, it's always on my mind!
I was shocked initially when I was told I had Cancer. I thought I would have surgery and everything would go back to normal. I was fortunate that my Surgery went well with no issues. After surgery I was advised they found another tumor DCIS 8mm. The Sentinel Lymph node had a 10mm tumor. I was told I had gone from Stage 1 to Stage 3. My husband and I were shocked and very upset we walked to our car and cried. 3 hours later my Dr calls to advise me she spoke to Oncologist and I am Stage 2. I wasn't able to wrap my mind around this. I was scared to have jumped to Stage 3 after surgery. I prefer not to be at any stage of Cancer. The post from all the strong women in this Community Board give me hope and encouragement that I can get through this!
I was disappointed that the Surgeon only removed one Sentinel Lymph node, and it had a tumor almost the same size as the tumor on my breast. Surgeon said study shows no need to remove 20 lymph nodes, and have same results with treatment. But, I don't have peace of mind as to how many of my lymph nodes have Cancer. Anyone else worry when only one Sentinel Lymph Node removed? I need to let it go, focus on my Chemo treatment and go in stress free.
My husband is wonderful and helping me get through this daily. My daughters and family are very supportive too. I feel very blessed to have them in my life.
I was suppose to go on a Cruise with my sisters, and then begin babysitting my new grand baby. I had to cancel my Cruise, and put off babysitting until my treatment is completed.
Thank you all for your post that serve as Therapy!
This is the beginning of my Journey.
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Hey Gals, I’m back and feeling great! Day 9.
I agree with Wildcolonialgirl. You and I are almost on the same schedule for the TC
Day 3 and 4 were the worse, after that every days gets better and by day 9 feel back to normal and ready to get this done! The Neulasta is a little witch (b), I must say... I also had lower back pain/spasms on day 6. Had trouble sleeping every night until day 8. Tylenol helped with the aches and pains from the Neulasta. Hair still intact, waiting for that to start falling out still no wig.Thank you to everyone on this community who share your experiences and advice. I have read soooo many of your posts!It helped me to prepare and plan. I am so glad I found you ♥️
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Hello March chemo ladies. I am sorry that you find yourselves here but you are now tapped in to a limitless source of information and support.
Like you, I started reading the threads from the months before I started chemo (December 2017). There is a lot of useful information and it is comforting to hear about women finishing their active chemo treatment and moving on.
In order not to overload you, I will add just a few things I've learned. But I do recommend you do some searches on these threads for any topic that really confuses or distresses you.
Drink, drink, drink water virtually all the time you are awake, if you can. It supports your body's systems, it will help wash the waste chemicals from your organs (after they've traveled to your cells and back), and either plain or with some electrolyte/vitamin drops, it may be one of the few things you can stand to take in to wash bad-tasting (but necessary) food down when you don't feel like eating at all.
Don't hesitate to call your "help line" to your MO or nurses when you are uncomfortable with a side effect or nervous/frightened by how you are feeling. They REALLY mean it when they give you a 24-hour number and I found it very reassuring to check in, if for no other reason than for them to confirm that, yep, this SE is to be expected. And many times they have some advice to treat it (except for the hair loss - sorry).
If you're getting a taxane (Taxotere or Taxol), neuropathy in your hands/fingers and feet/toes may be a prominent SE. It is also one of the SEs that may linger after chemo is done and some women have complained of permanent neuropathy. Everyone reacts differently, but I found my neuropathy to be getting painful by my 2nd of 6 cycles. When I brought it to my PA's attention, she reduced my taxotere by 10% for my remaining cycles and recommended I start taking alpha-lipoic acid and acetyl-l-carnitine supplements every day because they promote healing of the nerve damage that causes neuropathy. Finally, for my 3rd through 6th cycles, I used ice packs on my hands and feet 1/2 hour before the taxotere through 1/2 hour after to lower their temperature and lessen the amount of the drug that makes it to my hands and feet. I checked with my MO/PA and they were officially neutral about the effectiveness of icing, but said it wouldn't hurt anything if I wanted to try it. I still have neuropathy but so far it is tolerable and I'm hoping that the result will be that it will go away completely after the taxotere is done.
Finally, there's lots of discussion on these boards about lifestyle changes you can make post-DX like nutrition, exercise, detoxifying your life (mind and body). If you are concerned about the health and beauty products you've been using and want to make changes, I highly recommend www.ewg.org which is the Environmental Working Group website. On there you will find lots of great information about the toxins in our environment (water, air, food). Most useful is their database called SKINDEEP which you can search for hazard scores for over 70,000 different products. They even have an app for your smart phone that allows you to scan a bar code in the store to see if there's a ranking for a product you're considering (they can't always keep up with the newest products). It may seem overwhelming so I've taken it slow and just looked up my current favorite products to see how they rank and look for alternatives.
You've got a great group here and I hope you support and encourage one another as you get through your treatments. Here's a quote someone gave me that I really like:
"You never know how strong you are until being strong is the only choice you have."
You can do this.
Mindy
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Thanks Mindy and welcome RVS.
I am day 14 of first cycle and my hair is starting to come out. Very confronting but at least now I know the chemo is hitting the new cells.
RVS interesting your comment on nodes. Check again with your doctor if you are worried. I am having chemo first, so I hope the chemo will knock any cancer in my nodes (and anyway else) on the head.
It is difficult when so much changes so quickly after a cancer diagnosis. Trying to settle into the treatment and get used to not being 100% has been a challenge.
Cancer is the only disease I know where you have to go from feeling well to being sick in order to get better.
Good luck to those who start chemo this week and those who are into already.0 -
Hi ladies,
Welcome to our growing group. The support here is amazing!!
RVS, I had a mastectomy with reconstruction during which the surgeon did the sentinel node dye test, and she removed just the one sentinel node. I had a 1 mm micrometastes and about 50 isolated tumor cells in the node. Given the size of my tumors and the node, the treatment course would not change and so no axillary nodes were removed. One reason is that if the course/treatment path is known, then removal of more axillary nodes can increase chances of lymphedema, particularly if (like me), there will be radiation treatment in addition to the chemo. As we all are learning, there are more lovely "add ons" to our potential side effects, and so I am happy with the decision to try and minimize that possibility. As for staging, there were very updated guidelines for breast cancer staging released in January of this year, and so that may explain the change. But the "nice" thing - if there is such a thing when discussing staging! - is that you were downstaged. And sorry about the cruise - we had to cancel our February cruise with our son, so I know how disappointing that is, but am putting energy into researching our next one when treatment is done. Hope you can do the same.
Steph74, I am a 4 round TC sister like you, and now 11 days post the infusion number 1. So far, the worst days for me were 3-4, with gradual improvement except for lower back spasms days 6-8. Other side effects have been manageable - latest is an underarm rash both arms and a rash on the back of my hands - something I used to get for years in the summer and which I haven't had in about 4 years. Other than that I feel good - and energy levels are back, so I am making sure to walk as much as possible, and working from home half days. I have been diligent about keeping everything in a journal - and will share info here and also with my nursing onco team - they appreciate the updates on each person's individual experiences. My girlfriend - who just had her 18 year check up - had a 7 month old and a 5 year old when she was diagnosed. The oldest is out of college and the youngest is a freshman in college, so the decision to "take it on" fully is good!
Yesterday I picked up 2 wigs and had my hair buzzed (think a cross between GI Jane and Sinead O'Connor). It had just started to come out (very gradually), but I wanted the wigs trimmed over no hair. I know that hair loss is so traumatic for many of us, and don't want to minimize that at all - for me, after looking into it, the cold capping/dry ice/head freezes seemed like a lot of added stress to infusion days. When it comes down to it, if I attend my 15 year old son's graduations, wedding, etc., in a wig (and perhaps a rather nice hat!), that's OK. Being an attorney by education and a former personal injury attorney for 10 years before moving into a different business, if I have one piece of advice - try not to get so fired up over the hair loss litigation/lawsuits you read about on the internet. All those attorneys aren't advertising because they "care" that much. They're advertising because they want clients, because the more clients they have the more money they make (and I can say this because I was one!). And yes, for some types of chemo there is a potential for permanent hair loss, but I think if any of think about our family/friends, etc., when they look at us, hopefully they don't see our hair. We are not our hair. What we're all doing here is our very best to be treated, to recover, and to be well. Each of us is finding her unique path on that road.
Sunday Mocktail - Tall glass - 1/2 orange juice, 1/2 real cranberry juice, lots of ice, splash of lemon lime soda and a lime garnish. Cheers and hugs!
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