Starting Chemo May 2020
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Hi Sabrina,
I had started a message to you earlier and got pulled away for kiddo bickering. I am so sorry you are having such a tough go of it. And to have the port scheduled on top of everything must just feel like a bit much at this point! As for your hair (and all of this really I guess) it can be such a personal experience. That said, I will share that my husband shaved my head fairly early on in all of this and while I was kind of bummed the first day and of course have moments when I wonder if I should have tried to cold cap or wish I didn't have to deal with the hair loss at all, I have quickly gotten used to it and shaving it has helped any subsequent hair loss to be far less noticeable. (We shaved it not to the skin but maybe to an inch or a little less.) My husband actually thinks I can pull off a short hair, look which I guess is good since that's the way it will be for quite a bit of time going forward as it grows back in. It's also quite cool temperature wise in this heat as well! All to say, it may not feel like it now, but you will definitely get through this and come out on the other side! I do hope they figure out your fever and GI stuff -- it must be so frustrating to be so uncomfortable on so many different fronts.
Sending you love and support!
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Thanks Keeping Calm and Suzy! I am feeling better today about the hair loss. Frankly, I couldn't bear the clumps coming out, constantly fighting to keep the hair out of my food, and the ugly bald spots, so I decided it was time and made peace with it. My daughter came over today and we face-timed with my husband and kids back in Belgium and did the deed
. It's still patchy and odd, but the lint roller is working....lol. Sharing a photo of my new look and my favorite response from my one of my FB friends.... a "bald salute" from one of the fantastic Ambassadors I worked with overseas. Hugs to all! Cheers,
Sabrina
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Love it!
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Sabrina, I love it too. What a wonderful group of friends. That's support!!
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Hi Everyone,
I am just checking in. I had a busy week. My ALPs were high so I went for a nuclear bone scan to test for bone mets. Luckily that was negative. Phew! They also said it was not due to liver mets. My MO said she was not too concerned after ruling out the mets but to mention it to my PCP. I also saw a Physical Therapist about my right arm, and I have some cording, so I'm doing exercises for that.
I had my 2nd TC yesterday, which went well. My White blood cells are apparently high so I'm skipping the Neulasta shot. They will retest me next week and see how I am doing.
With my hair I've decided just to let it fall out. I wear a beanie a lot so it's nice to have the hair sticking out. I've started wearing my wig on Zoom and I feel quite comfortable with it. I've been clipping back the sides like I do with my normal hair which makes it feel more like me.
Hope everyone is doing well!
Best,
Sue
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Oh Sabrina, love it~~
Today was supposed to be the 3of12 Taxol day, but blood work came back with very low Neutrophil absolute. Sigh. So for now chemo was pushed off til Monday, and doing shots today and tomorrow to boost white blood cells. Question dear ladies.. How are you keeping your levels up? If you don't mind me asking... what are you eating, doing? How are you soothing the bone pain? Took Claritin as the doc told me to but I feel something is coming on.. Aaaaaarrrgh~~ I hope to do chemo Monday.. Sigh.. Should I binge drink protein shakes? Hahaha hahaha.. Aaaarrrr... Sniff
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Cali_aargh – Sorry you had to skip your chemo, that's frustrating. I had 12 weekly Taxol in 2017 and found that exercise helped keep my white cell count up. I use to walk and go on a stationary exercise bike. It was also recommended to me by the advice nurse. I think it helped as I never had to miss a taxol session and I never took Neulasta.
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Hi Cali_aargh
I almost had to skip chemo yesterday because they kept having trouble accessing my port. My WBC count was low as well, but they just gave me the Neulasta and let me proceed. I'm disappointed, and definitely not looking forward to an increase in my bone pain. I have not found that anything helps except maybe exercise. I exercised almost every day this last session but it didn't help my wbc. I also found out that I am now in menopause, which I am feeling a little sad about. I had a partial hysterectomy in 2009, so my one ovary must have had enough of working overtime these last 10 plus years!
If anyone has any suggestions for the bone pain besides claritin and also keeping up the WBC count, I also would appreciate it.
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Oh Roxiegirl- I've been walking 30 mins practically every day.. I guess my body may want more? so I totally walked like a baby today.. Oh now I know what they mean about bone pain.. Literally limped back home after 30 mins as it felt like someone was pushing metal down my spine and legs. Oh goodness... Not sure if it's an ouch or eewww feeling... But bed with iboprophen sounds so good right now.
Angela-oh so sorry to hear about trouble accessing the port. Ouch~ That's still the worst part of the infusion day for me as I have this phobia with needles and have allergies to the tape... And please don't be sad about the menopause.. I'm so closely behind you sister.. guess we all have to face it eventually but being forced in early like this sucks... I'm going to be using it to get some free pass at being angry at my family soon. Muhahaha. Oh.. I'm actually going to go and get some good ice for my back now.. Boooo to bone pain.
Thank you ladies.. My mental saviors
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I hear you about not wanting anything to interrupt chemo and just moving forward and getting it done. I had the worst experience with port on Tuesday. This is kind of funny, but once I had the port, nobody really looked at my chart again since the appointments for blood work and infusions had been scheduled prior to my port placement. For me, the lab was early in the morning and then infusion during the afternoon. The lab draws blood much quicker so I was in and out within 5 minutes and then I would come back for infusion since I live close and infusion is scheduled several hours later. I don't like the idea of accessing the port and coming back later. This port has been the worst as far as infusions so far. It really hurt last time after they taped it. It felt like a bee was constantly stinging me for about 30 minutes. Next week is round 6 of 12 and they just figured it out so I will have my port accessed moving forward instead of the having the lab do a blood draw from arm. In my defense, I tried to tell them twice and they told me it had been taken care of. I just followed directions as they gave them to me. "your first appointment is in the lab, please proceed to ground floor." OK!
As far as WBC, I was concerned about this too since my numbers were starting to go down and am trying to avoid an interruption is treatment and my MO warned me that 12 weeks could possibly go further depending on these numbers. I had an appointment with a nutritionist this week. She told me that protein is key. I will need at least 90-110 grams of protein and at least 80 oz. of caffeine free fluid per day. Angela, this is why I asked earlier about protein powder. I was doing research on boosting WBC on chemo. Nutritionist confirmed. There is no way I can eat 90-110 grams of protein per day. She told me to start using Orgain protein powder. www.orgain.com. I looked at the premade, but they are not as high in protein as the powder per drink. Of course, this may help and it may not help, but I would like to try and do everything I can to avoid interruption.
Have a great day today. East Coast is supposed to be beautiful today so I am going to try and get out to enjoy some sunshine.
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Hi, mighty May ladies. Holding steady here in North Carolina. Sabrina: Your eyes say you've got this! Even with all you're going through. The "bald salute" is awesome. Some folks clearly care about you a lot.
Tuesday will be 6th Taxol of 12, which feels huge. (Same as you, Paula?) The cumulative fatigue they promised seems to be setting in, a little more intensely and a little longer each week, but still managing to get some work and some exercise in most days. I've got a constantly bloody nose from the Herceptin, and I am just trying to nurse my hair along for a few more days. Somehow, I feel like it will be easier to mow the rest down if I can just get to the halfway point. But it's going to be close and I'm trying to be ok with it either way. You all are inspiring on this count.
No advice on the protein, but I have been craving it constantly and am eager to hear what you all are doing. If you haven't encountered The Cancer-Fighting Kitchen by Rebecca Katz, you might want to take a look. The integrative specialist at the cancer center recommended it, and it's really one of the best cookbooks I've run across, cancer or no. There is a whole chapter on "Protein-Building Foods" ("Chemotherapy and other treatments break down cells and tissues; as a result, the body requires 50 to 70 percent more protein just to get back to equilibrium.") She's also got lists of recipes for specific side effects -- anemia, constipation, fatigue, low white blood cell counts, etc. A really kind friend is spending today making me a batch of the bone broth from the book, which is so generous it's practically making me cry. In any case, passing along the recommendation in case helpful to anyone here.
And here we all go. A new week, and such delightful new adventures for us all...
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Hi all,
Sabrina, love your pictures! You look great. The short hair suits you. From this angle it just looks like you have it pulled back. I love love the bald head salute. That is just awesome!
Cali_argh, My white blood cells have stayed very high so far. Higher than normal even. I don't know if it is me doing something right, or the Neulasta. But I do exercise every day. About 3 of those days are very easy 30 minute yoga sessions (Yoga with Adrienne on YouTube) when I feel my worst. All the other days are walks, which range from a very slow 1 mile, to the good days when I can do a semi-brisk 3 mile walk. I also make sure I drink 60-80 ounces of water every day, and I eat some protein with very meal and snack. As for bone pain, my oncologist upped me from Claritin for the first 3 days after, to 7 days. It did help.
Good luck to all this week.
XO
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Judy - I have the book, but I have not had a chance to make that broth yet. It seems that a lot of the recipes call for it. What a wonderful friend! Let me know how it turns out. Back to Thursdays for infusions. This Thursday will be #6. Just the one Tuesday so my MO could see me.
The fasting has peaked my interest so started researching, but haven't found specifics. What is the time to stop and begin eating before and after chemo? Are you able to drink liquids, like the bone broth before and after?
Thanks!!
Paula
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Hi, Paula. My hubs made the chicken "magic mineral broth" for me early on (delicious) and I'm eager to get my hands on the bone broth. That's an all-day project and I feel really, really fortunate that my friend is an excellent cook who didn't hesitate to jump in on this one. The rest of the recipes are very much the way we like to cook and eat even when cancer isn't in the picture. But it's really helpful to have all the nutrition advice and to know that these recipes are as packed with goodness as possible.
I thought I would do some kind of formal fasting, but it didn't seem very realistic with weekly chemo. I try to have a very light breakfast on Tuesdays before I go in -- maybe some fruit + coconut milk yogurt. When I get home, I'm just not very hungry. Maybe nerves? So, I'll sip on some broth or have a bit more fruit, and then a light dinner. LOTS of fluids. Then back to eating whatever I feel like Wednesday, w/ emphasis on light proteins like chicken, beans, tofu. Strangely, I haven't felt like eating much by way of simple carbs and sugars. So I just don't. I'm a pretty firm believer in listening carefully to your body around things like this. They are full of wisdom, even if they've kind of betrayed us at the moment. Good luck!
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Hi cali_aargh
I have a needle phobia too! Are you using lidocaine cream to numb your port before it is accessed? I used that and it was awesome for blocking the pain! Your oncologist can prescribe it. I also liked tegaderm patches for sensitive skin.
Paige
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Anyone here getting heartburn?? I have been getting it pretty severely on and off-I called the oncology nurse and they ok'd me taking gaviscon but I'd rather be on the prevention side.Judy, I'd like to order that book, the bone broth sounds delicious-what a kind friend you have!
I cut off my long locks last week with the kitchen scissors but I haven't buzzed it. As more falls out I find it getting blonder- the pic on top is today and the one at bottom is a few days ago.
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Snowflake22, what guts to cut your own hair! It looks fantastic! I love it.
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Hi everyone,
Julie, you look great! I'm a bit ahead of you I think and actually just went straight from my shoulder length hair to buzzing it. The strange thing is I still have a little bit of hair 2 rounds of 4 in and I feel like what I have may be growing? Maybe not. I'm wondering whether it will all fall out between round 3 and 4. I'm thinking probably yes.
I'll have my 3rd TC treatment this week on Thursday, but I've had a bit of a rough couple of days (more mentally in some ways than the actual physical problem) that were going to potentially delay chemo. I've been frustrated as I've done really well this cycle and then on Friday it looked as if my port might be infected. The incision didn't seem to be healing as I would have expected but a few people didn't seem to think much of it and so I assumed it was fine. The tell tale sign though was that directly above the port and then up the tubing seemed to turn pink/red and was itchy - no fever though. Of course it was Friday afternoon ... my MO called me and said the ominous "that does not look good" and said she'd call me back. Then the Interventional Radiology people (resident) called and said come in on Monday morning to get it checked. I so wanted to get it checked that day and live close to the hospital but wouldn't have been an option except in the ER which was sure to be a multi hour wait, and I didn't want to leave my husband with our 3 children unless I absolutely had to (typical mom guilt?!) Then my MO called back and said she wasn't comfortable with the IR wait and see and prescribed antibiotics but thought the port would probably need to be removed and a new one placed. I just want to get through my 4 cycles and really didn't want to have another port placed "just" for the sake of 2 more cycles! The good news is we've found a middle ground I think. I started responding to the antibiotics almost right away - phew - didn't need to go to the ER at all over the weekend and was seen by IR fellow and attending this morning who also talked directly with my MO. The conclusion is continue antibiotics, have chemo on Thursday, and then get port removed next week because it looks like it is a risk for coming through the skin - what?! Then for my final chemo I'll have a picc line placed for a day or two. They said I could probably get it in and out the same day as chemo. All to say, not the hiccup I was hoping for but hopefully have avoided a more serious issue, can stay on track with chemo, and the silver lining is getting the port out earlier and not having to worry about any of that as a complicating factor. I've definitely felt a little down about this issue as I know people sometimes have ports for years with no problems, but I think the plan sounds reasonable. I'm curious to see if my MO will have me do Neulasta or not this round as I definitely felt better without it this round but of course it's always weighing risks vs benefits. Really appreciate the opportunity to process/vent with this group who "gets" all of this! Hope everyone is doing okay.
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Julie-- you look fantastic!
Keeping Calm--- I am so sorry you are having a rough time with that port. I can't imagine having to have a second one put in. How does it come out like that?? Odd. I hope you find a comfortable resolution and that you don't have to delay the chemo on Thursday. I'm nervous about using my port for the first time tomorrow morning. My skin is quite a mess around the area from the bandages causing blistering and the port causing bruising. My MO ordered the lidocaine cream for me and hopefully that will help. I'll be thinking of you and sending good vibes your way
. Cheers,
Sabrina
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Hi Ladies, Round 2 day one down and it went better than expected with the port, no pain at all! Almost immediate headache from the cytoxan and dry nose/eyes again
. Last night I noticed a very strange "ropy" growth? coming from below my mastectomy scar and getting thinner as it entered my abdomen. I called my PS this morning but the only appointments available were for this Friday or next Friday and based on last round, I don't see myself leaving the house this Friday. I posed a question about it on a FB group I am in and someone suggested it sounds like Mondors Cord/Disease. I researched that and the photos look spot on like what I am experiencing. Has anyone else had this happen to them? Trying not to panic about it.Oh, and Julie, I have also had a great deal of acid reflux/heartburn and my MO says to take Pepcid AC as needed, which has been very helpful. My CT scan back in April did show a "tiny hiatal hernia" which may be responsible? I hope you get some relief!
Cheers,
Sabrina
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Hi Ladies! I’m 8 days out from round two and starting to feel better. I ended up with oral thrush again immediately after taking the steroids the day before chemo. I went back to taking the nystatin for 5 days and the thrush continued to get worse. My doctor prescribed fluconazole for 7 days and after 3 days it’s finally going away. I’m also having a ton of sinus drainage this round as well which I am doing everything I can to keep from becoming another sinus infection. Oh and a rash all over my scalp! Anyone else having any type of chemo rash? I am applying cortisone cream and trying to let it get some air. Otherwise feeling pretty good knowing I am halfway done with chemo!
- Sabrina I’m sorry to hear that you may have some cording issues. Hopefully it’s minimal and not painful.
-KeepingCalm, I always thought my port looks super close to the skin and wondered if something like that could happen. Hoping you are still able to have chemo on Thursday and the port surgery goes well.
-It’s been very hot here in Phoenix so we decided to take the kids camping in Flagstaff this weekend to hopefully enjoy some cooler temps and time outdoors. Have a good week everyone!-Christie
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Hi ladies, I am hoping to join this thread
I am set to start chemo on 6/29, however there isn't much activity on the June thread. I meet with the oncologist today and my MRI and port insertion are scheduled for Monday. I am 30 years old and scared sh*tless of all if this. Hoping to connect and share successes and struggles with other powerful women going through it at the same time. Mind if I join?
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Smichaels, by all means join us. I’m sorry you’re going through this but I hope you find this group as supportive as I have. I’m a little bit older than you but still in my 30s by a hair - 39! - and same fears as you but for better or for worse those have abated some as I’ve gotten into treatment.
As a general group update, it’s been a bumpy week after feeling pretty good the previous two. When I met with my MO before chemo yesterday, she still didn’t think my port looked great and said that she wanted me seen by the Interventional Radiologists again. So the short of it is, we delayed chemo and I had the port taken out yesterday after a long day of hanging around the hospital alone in a consult room fasting so that they could squeeze me in for the procedure late in the day. Had to have a Covid test for the first time which is now required before any procedures. That was momentarily unpleasant for sure and then wasn’t able to leave the hospital bc I could theoretically get Covid in transit before the port removal! And unfortunately I have to have another Covid test this weekend in preparation to get a Picc line placed this Wednesday for my last two treatments because it’s got to be within 5 days - Oy! The good news is (covid was negative) and MO and IR decided no need for a new port for the sake of 3 weeks but rather a Picc line would work well and can be taken out the same day as the last chemo. So while I had hoped not to delay chemo and only have the Picc line for a day for the last one, I am relieved to have the port out and hopefully 3 weeks with the Picc won’t feel that long in the scheme of things. Also, fortunately, while IR said it’s good we took the port out, it was not so infected as to require the wound clinic - thank goodness! Now continuing antibiotics for another 10 days to make sure I’m in good shape. Trying to keep marching along through all of this but definitely thought yesterday how much we all have to do alone as a result of Covid - I signed the consent for the port removal and was wheeled into the procedure room with no one there from my family - a strange feeling! Hoping I’ll heal quickly and chemo will be uneventful next week
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Anyone have any tips for choosing a wig? I am trying to control anything I can right now, so I've thrown myself into online wig browsing at wigs.com but its overwhelming. They all look so... fake. Except for the $2k human hair ones, of course. I have tried to navigate the many threads about wigs but if anyone is brave enough, I would love to see a picture. With Covid, I cant do anything in person, unfortunately. And the no eyebrow deal... how do you draw them on? Gah!
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Oh and screw the anonymity. My name is Shauna
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HI, Shauna. I'm glad you found us, but so sorry you have to be here. None of us really wants to be. It is scary, no doubt about it. And I see that your DX is really new, with very little time even to get used to it before you start chemo. Although the waiting was really hard, I found that as the days went on, I felt more and more ready to just get on with it already. These boards helped a ton, as did the therapist at the cancer center where I am. But it's a process for sure.
Very little advice for you on the wigs. I am living my whole life on Zoom these days, other than going to medical appointments, so I eventually just laid in a whole bunch of scarves and one of those halo half-wig things that you can wear under a scarf or a hat. Word on the street is that wigs are pretty hot, too, especially in summer. Before I decided not to bother with a wig, I bookmarked a whole bunch of them over a week or so, then sent the links to my stylist for his advice. Maybe something like that could work for you? Or you could start with a couple of cheapies or from a place that accepts returns to get a sense of what you like? I'm also not sure about the eyebrow thing, but did purchase one of these for future use: https://www.tlcdirect.org/Eazy-Brow-Eye-Brow-Stenc.... None of this is fun, but we're all here for one another, so just jump in as things come up and we'll do our best.
--Judy
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Thank you everyone for the tips! I bought several turbans and other pre-tied wraps. I also purchased a nice Raquel Welch wig pretty close to my own hair, as well as a fun purple one. I did some research and cold capping freaks me out. I dont want to risk any crazy brain or scalp cancer to hang around. Just get it over with, you know? I also picked up 5 pre-chemo prescriptions my oncologist called in for me. One is lorazapan, so I'm hoping that will take some of the edge off. My MRI and port placement are Monday, with a nuclear bone scan next Friday. I meet again with the oncologist the following Monday and chemo is now tentatively 7/1. Gets better and better, I swear. I did also pick up soft toothbrushes, claritin, immodium, and Ensure while I was at CVS yesterday. If nothing else, I will be prepared! Now nails.... what to do? Take all polish off? Paint them now? Eyebrows. Has any microbladed? I have dark brows so I've never needed to fill them in.
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Hi Shauna, Your MO is going to be the one to answer about the polish and the eyebrows, most say polish is okay but they may want to check your nails at each visit. Most would say absolutely not to microblading because you are so prone to infections. Check out Look Good Feel Better (https://lookgoodfeelbetter.org/virtual-workshops/), they offer free virtual workshops on make up and wigs/scarves a few times a week. I attended both workshops twice and feel like they helped a ton. I'm very comfortable in my wig now and get a lot of compliments on it (edited to add photo since I happened to have made an effort today). I wear scarves (usually) to my appointments just so I can be more comfortable. I don't find the wig hot or uncomfortable, it's just that having anything tight on my head all day starts to bother me. I walk around the house bald for a least an hour each day. I can't recommend headcovers.com at this time. I had a few problems with my order and it took WEEKS to resolve and numerous emails. Maybe when there's no pandemic they are better but I still found it to be an unacceptable level of customer service. I'm going in for my final Taxol treatment on Friday. I will then have four treatments (two weeks apart) of AC. I'm sort of looking forward to AC because I won't have to ice my hands and feet, won't need to take the steroids and will have a shorter infusion. I have heard the side effects are much worse (they call it the Red Devil, don't they?) so we'll see what my experience is. I'm also looking forward to starting the second and final part of my chemo. I meet with the RO on Thursday, I expect we will be scheduling my radiation soon as well. Then I only will have TEN YEARS of hormone suppression yay. LOL
Really appreciating you all right now.
Angela
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Angela: You look AWESOME. That is all. Rock on! --Judy
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Hot damn girl!
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