Starting Chemo 2020 January
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Hi there everyone! I am on day 8 and still feeling really good - I am feeling so good that I find that I have to make sure I keep up the Biotene brushing/mouthwash and intentionally drink a lot of water/ginger ale to make sure I keep feeling well. I have read posts from women who found they felt so good they forgot to keep up with the preventative measures that were helping them feel good in the first place.
So far it has been easy for. me to keep busy enough to not 'think' about cancer all of the time - am very aware that once I get my head shaved this Friday it will be harder for me to not be constantly reminded...... I am definitely getting my head shaved as my dearest friend will be here and I can't imagine going bald without her presence. I also don't want to see a bunch of clumps coming out. Right now I kind of feel like a "pretender" because I feel so good - I know there will be tears over hair loss, and I am going to a small party this Sunday - my first social outing with no hair (I will wear a hat, and maybe a halo with it).
Dysonsphere - I have my port on my left side as well. My husband says that sometimes it "pops out" more than others. I find that I don't like to have the seat belt over it when I drive - it doesn't hurt - but is uncomfortable so I always move the seatbelt to under my arm. I did find that the port made my chemo SO much more comfortable than I had thought - I didn't notice the treatments going in. I had read to put a quarter size amount of the numbing cream on it about an hour before chemo and to cover the cream with a piece of Saran Wrap - so that is what I did and it worked perfectly.
Heres to hoping/praying that we all have good weeks!
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Maddy, glad to hear you are feeling so well! Did you get the Neulasa shot? If not for that, I would probably have felt great the whole time. I will have to shave my head this week at some point.
Im pulling out handfuls. I have a velcro pad that I attached to my seatbelt for my left side port. I put it on my chest area to keep the belt just far enough off of it. I dont need it anymore so if someone wants it I'd be happy to send it to you.
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Bkerber - yes, I did get the Neulesta shot - and I had no side effects from it and feel very blessed! I had been told that some women found relief /success in managing the pain by taking Claritin. My nurse suggested just taking Claritin every day for my entire treatment and so I started taking about a week before my 1st treatment and every day since. I don't know if its the Claritin or just the way 'my' body is reacting to the Neulesta - but I have felt great and have had a lot of energy. One of my dearest friends went thru all of "this" 10 years ago and it was the Neulesta that knocked her flat for 3-4 days per treatment (she was every 3 weeks). She also took Claritin as a precaution but still felt horrible. She was routinely down for the count for those days right after the Neulesta shot. She has two close friends (including me) who are a week apart in treatments right now and neither of us is feeling any effect from the Neulesta - she is so thrilled for us and we are all wondering if the medicine has changed since her treatment.
Thanks for the offer of the pad - I don't think I need it - I am not in pain/discomfort from the seatbelt any more - just really don't like the feeling of the seatbelt on the port. And honestly - I am not driving much.
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Isnt that odd that the shot affects people so differently. I took claritin before and during mine and wow it kicked my butt for 2-1/2 days. I was down like I had the flu. Im going to start taking it today and maybe it wont be so bad this time.
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I agree that it is strange how Claritin seems to work for some and not for others. I don't know if taking it for a week for more before chemo started and continuing to take it every day is what made it work for me.... but I plan to continue taking it until chemo is done. I pray that you do not have any side effects for this next round.
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I went in for chemo yesterday and the port had flipped somehow. So I will be having revision surgery today and start chemo on Monday, putting me into February 2020 chemo! I had really focused on being positive and ready for whatever chemo would bring and instead I spent a day of painful poking and imaging tests and finally found out I had to have a 2nd port surgery in the same week! I wish you guys the best but I will be posting int he February group!
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So sorry you had to have it redone dysonsphere. Wishing you all the best on Monday.
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Maddy83F, how are you feeling? What day are you on?
Dysonsphere, so sorry things didn't work out as planned to start the chemo and that you need a new port. That must've been very disappointing and frustrating when you were all geared up to go. Praying for you that all goes well. Remember YOU GOT THIS! You are a strong warrior!
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I am on day 12 and am feeling really good. I drink water and ginger ale primarily - and still primarily eating yogurt, bananas, and the protein packs from Starbucks - just sticking to what 'sounds' good to my stomach. There is also a local cafe that has a spring salad that I will order for takeout - just greens and a light dressing - it really tastes good to me and I know I can't duplicate the dressing. My stomach is fine - but I just seem to have a strong sense of what sounds good.
I had my head shaved last night - am wearing hats that I purchased from headcovers.com. My hair dresser came to the house last night and shaved it - was glad I had a close friend here - both to support me as well as my husband. I have not looked in the mirror at my bald head yet - figure I will know when I am ready. I went to a Starbucks this morning - and chose to not go to the one closest to our house .... I do have a halo that I can wear with hats - and I have a wig - but I would need to look at my bald head to get them on - will do that tomorrow because we are going to a party.
I had planned the "head shaving" because I thought by now my head would be sensitive or I would be feeling so yucky because of chemo that I wouldn't care about getting my head shaved. Well - my scalp wasn't sensitive, no sign of hair loss and I feel great - but still got it shaved because that was my last "unknown". I have been told that timing of side effects are basically the same every cycle so now that I am also thru the first cycle I know what to expect. Now that I have my head shaved, I don't have any more 'unknowns' that I need to face until my DD A/C is over and I start the next treatment. I know I will become more fatigued - but thats doable.
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I was supposed to have my 2nd chemo last Monday 1/27 but my bloodwork revealed poor functioning of my kidneys and the doctor gave me a choice of going in the hospital for continuous IV fluids or coming to the infusion center daily for IV. I chose no hospital (duuh?) My kidneys are working better as of Friday but he wants to continue the IV fluid Mon and Tues and then meet with me. I feel ok except for nausea that started in the third week but its manageable with Zofran/constipation. I am afraid that he will tell me that I can't continue chemo. My oncotype was 51 so I hope that I can have more than just hormone treatments as a defense.
Its been almost 3 months since my dmx and I have a lump in the fatty "side boob" my surgeon left me. It is on the right which was my healthy breast with no signs of cancer and its about the size of a strawberry. Both the surgeon and the oncologist called it a hemotoma and said that it would be reabsorbed by my body. So far it hasn't and now I have pain just behind it in my back when I strain on that side. Its time for definitive answers based on something other than appearance and opinion.
I am glad to hear that so many are getting through chemo without a lot of side effects or misery. Its not fun but its not the worst. I will just be glad when I can look back on it and say "I did it and it worked!"
I hope February is a great month of healing for everyone!
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Just checking in. I had my second TCH 7 days ago. The first three days I just feel like I’m in a fog or coma. I sleep a lot and then day 4 comes around and I wake up feeling like myself. Day 7 brings the loss of taste which is just annoying. Lol. I’m hungry, but food all tastes like bland noodles. Tonight I have some bone/joint pain. That’s the first time for me.
My hair is almost all gone I shaved it after the first infusion because it was falling out everywhere I now look like I have the mange. But I have some cute hats and a nice wig so that’s all ok
Overall this isn’t nearly as bad as I had feared. It’s not fun, but it’s doable.
Hope everyone is doing well.
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Jlue - Thanks for checking in. Have you found the second round is similar to the first round with regards to side effects? I am on a different treatment than you are but can definitely relate to the 'fog'. Before my treatments started I had read posts about how on certain days women would wake up and feel great/like themselves after several days of not feeling well. It was hard to imagine until I experienced it myself! Sorry you have bone pain this time - I was lucky not to have it last time and pray that the Claritin continues to work for me. Just shaved my head last week - sure is easier to get ready without having to dry my hair! Haven't tried my wig - but love my hats and halo.
Hope this week goes well for everyone - I have my second treatment tomorrow.
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Though my SEs remained similar, if anything, my 2nd thru 6th chemos were EASIER than the first one. I got better at the fasting / timing and that really reduced my SEs, the worst of which was horrible constipation. The part that got harder over time was the "bounce back" on chemos 5 & 6. I had bad anemia by then and just always felt winded and pooped and "over it" -- even when the SEs had abated. The first 4 chemos I bounced back well inabout a week.
Besides fasting (see my earlier post on page 1 for details) IVs can help. Even just a hydration IV. feels good I did some IV Vitamin C infusions and those helped immediately with the post chemo symptoms as well as (I think) the cancer fighting properties. Another help re SEs is to walk and move every day even if just a few blocks... it helps your system process the chemo out.
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Shaved my head last week. Had my husband do it so I didnt have to look. Im getting used to it now, just wearing beanies with accent scarves to match. I look like I have the mange as well! Why isnt my leg hair falling out. I hope it starts soon!
I have round 2 tomorrow and we'll see if my taking the claritin sooner will help with my day 3 -5. I really cant complain. I have had 2 really good weeks of feeling fine.
Les, I hope you get some answers that put your mind at ease.Hope everyone has good days ahead!
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My side effects from # 1 and # 2 are similar. I have crazy diarrhea. But I have IBS, and was told chemo would likely exacerbate this. So I’m finally learning that I need to stick to a BRAT diet for at least a week after chemo. Maybe longer. I was eating fruit because it tasted so good! But then I’d have horrible issues for the whole day or night. Crackers, potatoes, toast...all work well. I usually try to stick to a fairly low carb diet, this is the opposite of that and seems weird.
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Jlue, glad your side effects are at least no worse. My first one bordered on constipation. I felt bloated and when I did take senokot a few times, of course I cramped and had diarrhea. I wasnt able to get my 1st Herceptin drip with round #2 yesterday because the ins company is still wanting more information about why I need it. So much conflicting information from my 2 different tumors. Still waiting on Mayo clinic to give their opinion. My MO wanted me to come back in a few days if they received the ok, but I said no. I have already waited this long and so I will just get it in 3 weeks so I can stay on schedule. I work in a 2 person office and the drive is far. I believe the first treatment is a 2-1/2 hour drip. He wasnt thrilled but did agree.
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Hi beautiful ladies. I just had cycle 3 of 4 yesterday. Starting to see the light at the end if the tunnel. Neulasta should be going off in about 8 hours. I'm taking Claritin, which might've helped a little the last few cycles, but otherwise I was still achy in my knees and lower back. It went away by about day 5-6.
Jlue, I've been dealing with A lot of stomach problems for years, so I say eat whatever sounds comfortable on my tummy at the time. Brat diet is always good. I've been dealing with constipation, especially around the chemo days. I've been taking a stool softener which seems to be helping a little. Then trying to eat lots of fiber. But too many prunes one night killed me...lol
Bkerber, sorry they had to delay the Herceptin. No fun dealing with insurance stuff. Makes sense just to get it with your next schedule then. I was laughing at your comment about leg hair, it took about 4 weeks til I didn't need to shave my legs after I started chemo...then they were baby soft for a while, and yesterday I noticed stubble again. Hopefully it's a sign that all my hair will grow fast...it usually does.
I'm noticing the eyebrows are starting to thin a bit. Eyelashes have always been thin. Does anyone have an eyeliner they recommend for sensitive eyes?
Santabarbian, I'm interested in the Vit C drips you did. They told me I needed to wait until after chemo for those.
Tomorrow I go for my first Acupuncture (while on chemo). The Dr also specializes in nutrition and supplements. So I'll see what she says. Her focus is on Oncology.
Sending healing prayers to all you lovely warriors!!
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Glad you are seeing the light at the end of the tunnel Havefaithtoday. Sounds like you are doing as well as you can be on treatment.
Interested to see how your radiation goes. Have you done your set up for that yet? I told my MO that I want to get all that done soon around my last treament so I can get going as soon as possible! I hate to wait. I dont think he gave me a timeline for when I was able to start but I dont see why I have to wait since I feel really good the last 2 weeks after chemo.0 -
Bkerber, thank you.
I saw my Radiation Oncologist right before I started chemo and she told me to set an apt up a few weeks after my last chemo. Then they usually start rads a month after chemo. Like you, I too want to get done and move on. I'll just be so glad when this chemo chapter is done. I hate all the unknowns that pop up and being in this immune suppressed state.
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Well, I made it through my 2nd treatment. 2 days of hell again on day 4,5 with body aches and diarrhea. Again, Claritin didn't help me so Im just going to stop trying with that. Anyone else have teeth pain, lol!
Ive come out the other side ok but still kind of weak from all the sleeping. Couldnt eat much and nothing tastes good anyway. I hope everyone else is doing ok and making it through.0 -
havefaith,
I did IVC throughout chemo. I had a consult from an Integrative Onc who does a lot of IVs in his practice (Dr Keith Block, the Block Center) and I decided that the benefits were possibly very good and the risks nil. The only real issue is they are expensive... though sometimes, they can be prescribed and covered. There is very good clinical evidence for them but not the double blind trail a MO generally needs to change his recommendations. There is the belief that IVs might reduce the efficacy of chemo but only because it has not been tested enough to disprove that. I decided to go for it as I had a gnarly TNBC with a bad prognosis that needed all guns.
I got 2 high dose C IVs per week beginning w my 2nd chemo. I also did Hyperbaric Oxygen in the morning, before IV to boost the effects. I dropped it back during rads and after, but still do one every 2nd week as a maintenance program.
I pushed my hometown MO to the limits of his flexibility but he told me later how much he felt the 'extras' I did helped me. He told me he would never have predicted a PCR in my situation, which is what I got. When I asked what I could do to prevent recurrences, he told me to keep doing what I was doing. It was very validating.
I also used a lot of heat. Read about hyperthermia and cancer. I found an article on how vets use heat for animal tumors to shrink them. Again, possible benefit, no risk.
We have the right to push the envelope of 'standard of care' if we are well informed, honest with out doctors, and not taking on too-serious risks.
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Im in the February group but, reading this thread as well sincd you guys are ahead of us (gives me an idea what to expect).
@Bkerber - not sure if this will help (if you want to try it) my MO recommends Claritin and Aleve for the Neulasta. I take Claritin/Aleve in the AM (starting day of shot) and then Aleve at night. This goes for 3 days (for me Friday, Saturday, Sunday). I didn't have issues with joint pain. Maybe try adding the Aleve to the daily Claritin around the day of the shot and 2 days after?
@Jlue "Day 7 brings the loss of taste which is just annoying"
Does it come back at some point before the next Infusion or is it a constant loss of taste until post final chemo?
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bkerber, Congratulations on getting through #2. Every cycle completed is a reason to celebrate! I felt pretty yucky on days 4-5 too. I'm on day 7 now and feeling a little better. Still more tired this time. I thought my bone pain had subsided yesterday and then boy it came back tonight to remind me it wasn't over yet....especially in my lower back. I had walked a little longer today and I have no idea if that added to it or not. I've been taking a lot of Epsom salt baths and those help a bit. I have no idea if the Claritin helps me or not. I take it day 1-5 and then I usually stop. I have also had some teeth pain too and when I chew sometimes I get it in my jaw, but it doesn't last long.
My taste buds are off too but my appetite is back. Just can't find the right thing to eat to satisfy me.
Santabarbarian,
That's great to hear that all those Integrative therapies have had a positive effect on you. I'm a big believer in Integrative therapy. I just met with a great Integrative Natural Dr a few weeks ago and she gave me some good supplement recommendations and then I had acupuncture with her last week. It felt great. Hoping it makes this cycle a little better or at least not worse.
Yes, if the traditional Drs don't have studies showing the safety of some of these alternative therapies, I think they just nix them. It's too bad, because we need to incorporate anything we can to make ourselves healthy. I've been hearing more and more about hyperbaric Oxygen. Tell me more about the heat therapy. That sounds interesting.
Morrigan, my taste keeps varying. It doesn't stay in a constant bad state. Sometimes things just taste more different than other times. So I would say it will probably fluctuate throughout the cycles. Some things aren't as salty as I'd like so I tend to crave more salt, but I've always craved salty foods. Spicy or flavorful foods (Mexican, etc) I seem to find enjoyable. Water, my go to, is generally ok, but when it gets a metallic taste, sometimes adding a lemon helps.
Stay Strong Beautiful Warriors!!!!
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When exposed to 108-109 degrees for 1 hour or so, most cancer cells will die or be badly damaged. Healthy cells will not die until 113+. My tumor was very palpable (near the surface of my breast) as was my node. I used a very hot hot water bottle on both, to the point of superficial bright pink burns on my skin (that went away). I know what a 105 degree hot tub feels like (fantastic!) so I went up from there. I did that 2-3 x the wk before chemo and periodically other weeks, to damage those cancer cells so the chemo could finish them off.
There is a dept. of hyperthermia at UMD, Wash U , and Cleveland Clinic among other places It's real medicine. Usually it's hard to heat the tumor extrernally so they need to deliver the heat a different way (ultrasound or other ways). But I was pretty sure I could deliver the heat externally, like a vet does with an animal. In any event I knew it would not hurt me.
After my treatment I spoke to the head of hyperthermia at UMD and he told me my self-designed 'protocol' was likely to have helped me a great deal.
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PS My integrative doc was an Integrative *Oncologist.* I liked that because he knew both ends of the treatment, and could advise on both integrative therapies and traditional chemotherapy. His clinical practice, using lots of integrative approaches, has very very good rates of success so I felt I was in good hands.
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Morrigan - Thanks for the suggestion of claritin but it doesnt touch what happens for those 2 days. I have told them about it but I guess I'll just push through.
I signed up with a Neulasta study and she actually called me. Not sure if she will touch base with the dr or not.
As for taste, it does come back however, some things just dont taste the same. For the first week the best way I can describe it is when you burn your mouth with hot food. Its that feeling without the pain. I eat ice during my Taxotere drip and at least have had no sores. Dont know if it helps, but it doesnt hurt.Havefaithtoday, I too have lower back pain. Im not sure whether its from my sleeping for 2 days or just the chemo. It goes away after about a week and a half. I do feel random shots of pain in different areas of my body too, but that also goes away. Good luck to you all!
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Thanks for the answers on the taste, i appreciate getting an idea of what is to come, it will help me cope
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Well I received approval from insurance on the Herceptin, so I guess Im in it for a year. Ugh!! I suppose I should be thankful there is a treatment but the thought of going every three weeks just makes me tired. I have been told I wont need the neulasta shot with it so thats a huge plus. Im waiting for my first charge from the insurance on my treatments. Curious to see what the contracted rate for this is. I do have AFLAC that will offset some of it and I should hit my out of pocket quickly.
I sure feel bad for anyone who doesnt have decent insurance coverage.Hope everyone is doing well and have a nice Valentines Day!
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Just making notes here. Started chemo 2/4 Just now starting to lose leg hair! lol Indigestion more with this second round than the first. Feeling good after a week.
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Happy Valentine's Day to all you lovely ladies!
I have a quick question, has anyone else dealt with all over itchy skin? If so, did anything help? It's day 11 post chemo and it started yesterday. Wondering if a Claritin would help or if I need Benadryl.
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