Chemo Starting August 2018
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Hello my group of strong women,
I'm sending you all a good day! I'm at work again, nine more days till round #4 on the 5th. I see surgeon on the 2nd, to see how the tumor is doing. "Let's hope it is not doing to well in this fight." Minimal SE this round, horrible appetite, probably lost another 4 pounds. 5'9 and made it into the 140 range. Nothing like looking like a damn alien with my bald head and now getting so skinny my wrinkles are really showing. I just had to increase my reading glass for work, my eyes are really going down hill all of a sudden. I have always had good distance range, but needed about 175 for work, just had to go to 250. What the heck is going on, is there anything this chemo crap does not effect? Like my MO told me, each round will bring a new round of SE, this round my face broke out like I was a teenager. Well back to work girls, hope you all have a good day, keep on keep on. Hopefully we will all be finishing up our chemo sometime in Nov.
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sunshine89-
Thank you for the advice. It’s hard to stay hydrated because I can’t drink much. I especially can’t drink water because of the bad taste, but I have been able to get in some apple juice. I’ll try orange juice. We also talked to the cancer center about sending someone to my house to do fluid infusions twice a week, and they said they would do that! So I’m excited about that this time around. I’m sure that will help a lot with side effect management.
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hughope1-
I’m so sorry about the weight loss. How much did you weigh before all of this?
Do you feel a difference in your breast where the tumor was? I started noticing the tumor shrinking drastically after just the first chemo.
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nisha517 same here and I just feel awful for my husband but also during chemo I kept getting a allergic reaction every time they gave me AC, I had this intense burning and itch and it happened again this weekend and kinda looks like little blisters. It’s so embarrassing I feel so gross and just down about myself. Cancer, no hair, feeling fat, ( baby weight and chemo weight ) now issues down there. I need a break ;(
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smansmom-
Have you talked to your cancer team about this? Maybe they can provide some advice for the itching and burning. And definitely talk to them about the blisters. That must be so uncomfortable. It could be from dryness, also. I also felt itchy there, but I think it was more after the first chemo and not as much after the second.
I understand, I feel gross, too. Even after I shower, I never feel clean. I haven’t felt clean since befchemo started. With all the SE’s including flaky skin, no hair, no eyebrows, etc I just feel yucky. People keep saying this is all temporary and just a short part of our lives. Well, for us going through this, it feels never ending!
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nisha517 I never feel clean either , ugh. And I just did and they said the reaction is common but the blisters could be a hsv virus that I never knew I had which is just so embarrassing and makes me feel even more gross and hate myself. They said it’s nothing to worry about and sent me anti viral prescription. Can’t my life get any worse, I feel awfu
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Nisha I think you should start Claritin two days before chemo day. (For the Neulasta bone pain SEs.) I was told two days prior and continue for 7 days total. That has totally taken care of it for me so far-- no bone pain or aches. I was also told to do L Glutamine (750 mg) the day prior, the day of chemo, and the day after. I think that is for digestive tract support -- but I honestly can't quite remember!
I pour about an inch or two of ginger kombucha in my water. It flavors the water nicely without adding much sugar.
I am now on day three of chemo three... three is when I get tired usually, but I woke up at 5:40 am feeling good. I had fluids in a Vitamin C IV yesterday and I am feeling highly decent. Spacey but not bad.
My Naturopathic MD suggested 1-2 T of ground flaxseed for constipation. Toss them in the blender, grind up, and then put them in a small glass of water (I used kefir) and swill them down. So I did this last night. Not bad. We'll see how that plus magnesium citrate work today...
My best news is that my 3.8 cm tumor has been reduced to a lentil size, which the doctor deemed "scar tissue" and my lymph node (formerly 3 cm) is "gone." My oncologist is very reluctant to over promise so when he said "this is exactly the outcome we are hoping for," it made my day. And then he said "So keep doing everything you're doing." Which made me very happy because I have felt some skepticism or push back on a few of the things I am doing, but with that comment he seemed to be validating some of the "special" things I have asked for or included in my treatment plan. Like keto diet, nutritional IVs, fasting mimicking, and hyperthermia, and supplements.
I asked the oncologist about the achiness/stinginess I sometimes feel near the tumor site. He said that is my body breaking down the tumor, and is from localized inflammation, and is normal to feel. The pain I felt prior to treatment was different... it was more like little stabs of "single-hair-pull" pain radiating outwards from the tumor. Now it's more like a stinging/aching that is spread over a larger area.
The tricky part is still the stray cells. TNBC tumors often shrink well at the outset but there can be pernicious stray stem cells circulating. So no backing off and no shortening the course of treatment. (I had to ask!)
My naturopath had a test done on my blood that separated out and counted the cancer cells in my blood. This was after 1 chemo had taken place. I think there were 5.5 cells per 7.5ml. That is a number she wants to retest and see go down. There were several KINDS of mutated cells, some mutant blood cells, some mutant epithelial cells, and a few others. So the cancer I have has a variety of different weird cells. The cells were cultured and tested against nutritional compounds with known anti cancer effects, like C, Curcumin, etc... About 30 compounds. Six showed good efficacy so she is adding them to my program.
My son made me the most delicious tiny organic grass fed filet mignon yesterday. It is so, so special to have my son (27) come take care of me. It's like a window into him as a future dad. Very meaningful.
Hoping for good hydration, energy, and pooping for all on this board!
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smansmom-
I’m so sorry. I know it’s tough to get more bad news on top of all of this, but that is good the doctors said it’s nothing to worry about. How long will you have to take the anti viral medication?
Santabarbarian-
Thank you for the advice. I’ll start the Claritin today. My husband is hesitant to start stuff too much in advance because he says my body will grow a tolerance to it. But I’m telling him it’s working for a lot of women on this forum. Also, I asked my infusion nurse if I can do vitamin c IV, and she said no because it interferes with the chemo. However, I’m seeing that many women get it done. I’ll have to talk to her in more detail about it and see how it interferes. I would really prefer to do it. Whenever I get the stinging feeling on my boob, I get happy because I know the chemo is working on the tumor. My tumor also shrunk quite a bit to the point that even the doctors are saying it’s pretty much gone. But just like you, I also had to ask why I have to continue with chemo then and why not just go straight to surgery. But I got the same response as you. The damn floating cancer cells. Before treatment started, I also had bad pain on the tumor breast. But a different kind of pain. It felt like an alien was trying to push its way out of my body. I’m so happy your son is with you through all of this. We all need a support system
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nisha517 they said a few days till symptoms clear, I feel so gross. I also agree with Claritin before chemo. I took it the day before and 5 days following and it helps tr
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smansmom: you have a new baby; that can be an adjustment "down there" as well. Never be embarrassed; we're all grown women, it makes sense to share regarding women's issues.
My sexual urge has disappeared, except for every once in a while; although it's usually midday when my husband is at work, unfortunately! I think chemo is messing with my periods though. I really didn't get my period this month; which is unusual as I'm very regular. There's just no end to the bullsh-- that comes, is there?
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Cowgirlsdon'tcry: We do have a lot in common. I was a Western cowgirl in my youth, I am retired and very sympathetic to the younger women who have to deal with young children and jobs, my hair fell out the 15th day and is now bristles, I have a runny nose, my third infusion is tomorrow. I wasn't shocked at the dx, I just don't believe it and still try to convince doctors that they are mistaking an old injury for cancer. They choose to believe the ultrasound, biopsy and PET scan but I am still doubtful. I had so few SE's from the first infusion I suspected they were using a placebo, although it seemed cruel to make me get a port. Something is going in because my blood tests drop like a rock every time and my hair did fall out. I am getting chemo first to try to shrink the tumor and the many large lymph nodes they claim are affected. Hopefully this will allow me to get a lumpectomy since they already say I have to have radiation and hormone treatments (100% positive). I am most worried about the lymph nodes because I am very active and love to do heavy yard work. Losing my strength will be a much bigger life changer for me than a breast. Your poker games sound fun. The good thing about being treated in Florida is that I am not considered as "old" as I would be someplace else. I feel very young and am not going to be the first female in my family not be healthy and active into my 90's (and some above that!).
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To clarify: my Vitamin C IV is a very high dose of C, way more than you can get through oral administration. There is a blood test they have to give you to see if you can tolerate such a high dose or not. In high doses, Vitamin C is a pro oxidant -- oxygen is not what the tumor wants and it causes it to die. I see there is some disagreement about IVs among doctors. In many cases, the evidence for IVs is more anecdotal than "double blind clinical trial" but nobody is doing double blind trials on vitamins since there is no money to be made there.
The integrative medicine cancer specialist I consulted with (who is in Chicago and has been doing cancer treatment for 30 years) is very pro IV vitamins and high dose C.
The further complication to this decision is that different BCs have different rules. So my TNBC is not another woman's TNBC (there are six subtypes of TNBC). I think it's important to be specifically tested by a knowledgeable doctor. I think an integrative or naturopathic doc is a good person to consult, even if only for the rebuild repair phase after we get done w chemo.
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I love this board. It is so informative! I’m going thru round 3 right now.
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santabarbarian-
Who was the doctor in Chicago? I live in Chicago
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benji69. I know what you mean about wondering if they got it right in their diagnosis. I am one of the most healthy 68 year olds I know. I take no medicine except for vitamins, have always been very active, still ride horses, and can keep up with my husband when it comes to putting in a hard day on our small piece of property and then boom I am told I have cancer. To start out they felt it was early, not in my lymph nodes as they seemed very soft and healthy. Recommendation was to start with surgery (either a lumpectomy or mastectomy) followed by radiation. Several women said just cut it off (but of course they were not the ones facing the decision). Luckily I had the most fantastic surgeon who believes in breast conservation so after much thought and prayer I choose to have a lumpectomy. It was not loosing the breast that bothered me it was all of the side effects that a mastectomy can cause. The bad news was that when I had the lumpectomy which included removing two lymph nodes, the lymph node showed positive for cancer. That meant everything changed and instead of just having to have surgery followed by radiation, I have to have 4 infusions of AC followed by 12 infusions of Taxol. Then to make it even worse I still have to have radiation. That one I am still trying to figure out. I am with you, I just want to come out at the end of this feeling as good as I did when I started the whole journey. Trying to keep active (even when I don't feel to good), getting out in the yard, visiting my horses, dogs etc. I live in Oregon so the weather will be changing soon so it will be harder to get outside. Not sure if that is good or bad. The 2nd AC kicked my butt, and the 3rd one put me down yesterday but I am feeling much better today. Keeping a good attitude is so important so I will sign off with "Staying strong through it all"!!!
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kwilli I know what you mean! I felt like I wanted to and once me and hubby started I was all blah. My periods have completely stopped! I got once since having the baby right before my first chemo and nothing since. I’m glad I did egg freezing for this reason
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Nisha, it's Dr Keith Block. He's in Skokie.
He has a book "Life Over Cancer" which will be much more accurate than my paraphrases of him... They look at all of you.... nutritional status, blood analyses, diet, psychological support, exercise, supplementation. And they do chrono-modulated chemotherapy (given in slower drips over hours at specific times in a 24 hour day).
One of the things I pushed for was getting early morning taxotere, then coming back for 4 pm carboplatin, as these times were closest to the optimal timing of those drugs from what I gleaned from another doctor.
Here is a link to Dr Block's thoughts on high dose vitamins:
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Sunshine89, docetaxel (taxarere) is one of the 4 drugs I'm getting at the same time so a little hard to say what is causing what. So far my biggest SE,s that can be contributed to possibly taxotere are fluid retention, hair loss (90% gone by day 7 of second infusion), constipation, dry mouth, loss of appetite and fatigue. I'm also dealing with diarrhea once I get constipation under control but I think that is Herceptin and perjeta related. Below I have listed the side effects for docetaxel but so far I haven't had any issues except those I noted above. They give me an injection of Neulasta after chemo to help build white blood cells back.
I don't want to scare you, it is hard but I think some has to do with getting all 4 drugs at same time. The SE,s I'm trying to manage are the constipation and diarrhea, lactolose on day of infusion and maybe next day, then moving to benefiber but still working to get this figured out. Not much I can do about hair (got it cut short and bought some caps).
Hope this helps, others might have some thoughts also. Take care and wish you the best.
Side effects:
- low white blood cell count
- susceptibility to infection
- fluid retention
- allergic reactions
- hair loss
- numbness in the fingers and toes (neuropathy)
- nausea
- vomiting
- constipation
- taste changes
- fatigue
- muscle pain
- bone or joint pain
- nail changes
- mouth or throat sores
- watery eyes
- irregular periods -- this can include temporary cessation (usually resume after medication is completed) or permanent cessation of menstrual periods depending on your age and other factors
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hughope-
Yes, I do tend to eat a lot the few good days before chemo! My 3rd chemo is tomorrow 😔. I am using a lot of great information I’ve learned from all of you. I hope it’ll work minimize the SE’s! Any advice on what I should eat today and the day of chemo
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Cefinkc...you look adorable! Good luck with this round! I am thinking about and praying for you!
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who else goes in today or tomorrow for infusion?!
I have number 3 tomorrow am.
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Me too going tomorrow for 3rd AC.
Thanks Mactaz that was helpful:)
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Hello everyone, I have not been posting lately but reading discussion a few times a week. I was doing TCH and finished 3, my 4th is supposed to be this Monday but cause I developed Tinnitus (from Carboplatin) along with many smaller smaller SE, my MO suggested to switch to Taxol starting Monday for 6 weeks.
On TCH, I know that after at least 10 days post infusion, for many of us were able to pretty much do normal stuff. On Taxol, since it’s weekly, what are the days when you can’t do anything but sleep. I have 2 elementary kids and need to make arrangement if it’s not possible for me to do things for them.0 -
Just returned home from 3rd A/C infusion. There is a hope some shrinkage has happened.
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I was supposed to have my first infusion of taxol tomorrow but I ended up with a sinus infection and got put on antibiotics. They cancelled my treatment for tomorrow which is annoying but I was told it’s not safe to get an infusion with an active infection, so I have no choice. As far as losing weight all I’m doing is gaining weight
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Yay Benji69!!!!!!!!!!!1
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sending feel good vibes to everyone who went today and for those of us that go tomorrow!
hope everyone has a weekend full of rest!
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Had my 3rd infusion AC today...overall it went well...i always feel little heavy heart/heart burn first 2 days...is there any solution for this ? i also got fluids with chemo and trying to drink water too
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I am on Day 5. Doing reasonably well with the same SEs as the first two times, mostly fatigue and constipation. Going to try to take a small walk and see if that gets me going (or leads me into another 4 hour nap).
Sending good wishes to all.
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