October 2013 Chemotherapy
Comments
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How is everyone this evening? Hopefully nausea is improving for those of you who are dealing with it. I don't know if it's just me but I have had no nausea problems,( knock on wood), day 4 #2 and I would recommend that you take your nausea meds regardless of whether you think you need it. My MO said to take for 3 days around the clock after treatment and it has worked for me. I didn't really wake up in the middle of the night to take them but if I woke up and it was time I would take it. Good luck, back to work for me tomorrow!
Julie -
I'm still waiting for official word on chemo. I see oncologist Nov. 1st so I am no longer an October chemo person but love the group. I had a fever on the weekend but it was just a cold that seems to be resolving quickly. My wound is smaller but home care today said it will take weeks to heal.
Hope everyone is doing ok. -
End of day 5 and my stomach is getting better, yeeh!
Good night, ladies! -
Hi Ladies,
First of all thank you so much Lili for your post and response to my post in such detail. I appreciate it more than you know. I has been a tough couple of months as you all know. So thank you!
I have made lots of notes and wrote down the tips that everyone has posted. I meet with my oncologist tomorrow so looking forward to this and will get a plan for what the next step is for treatment.
Wrenn, Gramof2boys and gia444 - I see from your stats that you are triple negative, is that accurate in what I am reading? I am as well and I was wondering how much information you might be able to share on this topic? I was on a board for TNBC but I didn't feel the love...lol.
I was wondering if someone could help me with the abbreviations that you post? It would be helpful.
It is good to hear that most of you have had a better day...so happy for you all.
I am happy I came onto this board, you all sound like great women and I think I could find this a good place for me.
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spirit - here is a guide for abbreviations:
http://community.breastcancer.org/forum/62/topic/735716?page=80#post_2582606
Here is some TN info:
http://www.breastcancer.org/symptoms/diagnosis/trip_neg
http://community.breastcancer.org/forum/72/topic/752075?page=686#idx_20574
http://community.breastcancer.org/forum/72/topic/775662?page=8#idx_211
There are some other specific threads that you can find by looking at the all topics section and finding the listing for Triple Negative under the area for Connecting with Others With a Similar Diagnosis. -
Hi Spiritblessing, All I really know about triple negative is that chemo is always recommended because of the aggressiveness of the type. None of the hormone type treatments work with this type. I learned about it from this forum since my surgeon didn't mention it. I was also told that chemo isn't offered after 3 months post op so I might be missing out on that.
There are women here with tons of knowledge and they are really generous with it. I really depend on this site for information and for support. I think you will like it. Ask questions that come up for you. -
SpiritBless I am triple negative and I read some of the posts on the TNBC board but sometimes it's a little negative, no pun intended. I will just try to keep an open mind, be positive and do what I can to beat this. I know new treatments are on the horizon, I know exercise and diet are also important, especially carbs(sugars). Hopefully we can all support each other the best we can. We are here for each other. -
Gram - yes that is why I didn't stay on that board because I thought it was pretty negative as well and I don't want that at all. Is exercise and diet especially critical for TNBC or is that the same for all types? You said especially carbs (sugars) you mean to avoid correct?
Wrenn - I was also told that there is a 90 day window but I didn't think to ask why. I wondered if it was because of insurance purposes. Is it just for TNBC that there is this window? What would the reason be?
I really like you ladies respond so timely. This is another plus for this board. I will be checking out the abbreviations so maybe I will be better at understanding what most of you are referring too. Thanks! -
Hi Spritblessing, I was told that the 90 days was because TNBC moves quickly and they like to attack early to kill off stray cells before they multiply. Once you get far away from the original pathology there may be more cells than chemo can kill off and then the risks of chemo don't outweigh the benefits. I didn't hear this from my oncologist and can't remember if I read it here or somewhere else. I got the timing from my oncologist but no detailed reasons. He just said they had to move quickly because of the aggressiveness of the type. -
Oh I see. So why do you think you have missed out? Wouldn't the 90 days apply to all types of cancers? Are you aware of any clinical trials for TNBC like doing chemo before surgery etc.?
Thanks SpecialK for the abbreviations...I feel much better to be able to understand what you all are posting. -
I'm coming up to 90 days and I have an open wound. The surgeon says the wound won't close if chemo is started and he thinks it will take a few more weeks to close. I will find out for sure on Friday. -
Hi Spiritblessing and Wrenn,
I am also TN and my MO says chemo usually starts 1-2 weeks after surgery. -
Hi Jianchi, My MO told me in the beginning (when I was healing from surgery) that he wanted to start before the 8 week mark. When I went back at 8 weeks with the new wound I was told that 3 months was as long as they could hold off. -
Yes my MO told me that I had 90 days post op to do the treatment and I had at least 6 to 8 weeks post surgery when they wanted to start. I got a bacteria infection on week 3 and had to be on some strong antibiotics so they wanted to get through that first. They want to have me healed from that before I start as well.
Wrenn, do you mind me asking what the wound is from? -
I had a hematoma that was huge and wasn't followed up on for weeks (quit that surgeon) and it festered deep down and then tunneled it's way to the surface and broke through at the weakest point which was my mastectomy incision. It was infected so I needed antibiotics for a couple of weeks and now I am having the tunnel packed with strips of anti microbial tape every other day to heal it. It heals from the inside out so it has already gone from a hole 12cms deep to about 4 cms. It is healing but the surgeon says they can't start chemo while it is still open.
My situation was unusual I think and was caused by the surgeon not doing any follow up when I complained that the drain was draining blood instead of serum and was still doing that at 5 weeks. She pulled it at 5 weeks and the incision burst open 2 days later. I went to a different hospital and got a new surgeon to treat it. She had not followed up repeated requests by home care for the bloody drain or for the infection after the good drain was removed so I was just frustrated with her. -
Hi Wrenn,
Thank you for the info. I will start chemo about 2 weeks after my SNB, so it is within the time window.
Wish everybody the best!
J -
Darn Dexamethasone ! No nausea, feeling OK but can't sleep...augh ...lol it could be a lot worse so I'm trying not to complain. Did try a Lorazepam and it helped some just not enough. This happened last time too - now if I only liked to clean house I'd be all set. This too shall pass!
I've been using some tape to collect the hair that wants to fall out, it's been helpful as there is less to pick up. I'm ready for the baldness!!
Hang in there Warriors! Remember - we got this!! -
Up at 4am with u Pam, couldn't sleep. Guess anxiety about treatment 3 today...ugh -
Hello ladies
I will be starting my first 4 rounds od AC today. I am very scared of the unknown. I had my port placed yesterday and its pretty painful.
I will let you all know how it went today.
milane -
SpiritBlessing:
I’m glad I was able to help put this thread in perspective and am happy you have decided to join us. I, too, am triple negative – and I have also stayed away from the TNBC (Triple Negative Breast Cancer) threads because they seem to me to be in more advanced stages of cancer which is NOT something I want on my mind right now. One step at a time….I prefer to attempt to keep positive when possible; reading some posts at the TNBC thread defeat that for me.
Triple Negative is pretty simple. Our tumor biopsies were initially tested for cancer. Once that was determined, they moved on to hormone receptor testing – wanting to see if our cancers responded to the 3 hormones; estrogen, progesterone, and HER2. None of our cancers responded to those so the MO’s (Medical Oncologists) know there is something else in our bodies that are energizing these cancer growths. That’s it in very simple terms. Treatment: chemo. Hormonal Therapy will not work as our cancer does not respond to the hormones. Radiation: some say it can be used if there is enough breast tissue left remaining and/or in the lymph node areas. My medical team ruled it out right from the start – I had bilateral mastectomy (no breast tissue left to radiate) and I’m guessing they figured since I required chemo anyway, why radiate the lymph node areas when chemo would do a more thorough job of killing any remaining loose cancer cells.
Yes, TNBC is more aggressive cancer. But it is often times, if caught early, very well killed off and the recurrence rates are very favorable. But chemo is hard; they are looking into other chemo regimens that MAY be as helpful in ridding these cancers but I’m guessing other women feel the same as I do…..I want the “big guns” that are “known” to kill this cancer done right now – I don’t want to take a chance on using something that may not be as effective. I do feel selfish on this, to a degree, knowing all the very brave women who have traveled this journey before us and made things easier for us to tolerate – that’s just something I will have to learn to live with.
There is the thought out there that 3 months is the cut-off time for chemo to begin in TNBC patients. I can tell you I have found enough medical studies out there that offer a different point of view. That point of view is that 3 months is the OPTIMAL time to begin chemo in TNBC patients. Other tests are available to assist Me’s in determining if parts of cancers may have broken off and traveled to settle in other areas of the body – a PET Scan (like I had) can show if that happened (in my case one potentionally did so I had to go in for another surgery to get one particular node removed that was making my medical team very nervous – turned out to be benign). And the surgeon who said chemo 1-2 weeks after surgery goes against everything my MO told me – the surgery needs to be well healed before chemo starts (otherwise wounds may not heal properly and be too open to infections which you don’t want w/chemo). Here is my advice to you: Talk about this in length with your MO – he/she can answer your questions about this better than any of us can since they are the ones who are intimately involved in your cancer. Your medical team is your best resource.
Exercise and diet are important for all types of cancers. You need to find what you CAN do (there are times you will feel very poorly so you don’t want to jog out on a lengthy run but instead maybe take a short walk around the block) when you can do them. Diet is something you should discuss w/your MO. I’m finding after my first infusion that items I thought would not be fine are actually OK. So check w/your MO (mine said NO restrictions on my diet while others were told several foods needed to be eliminated from their diets) – see…different opinions so let your MO guide you in your care.
Good luck at your MO visit today. Take full advantage to ask all your questions and make sure they are answered to your satisfaction.
Lisa
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Milane - good luck to you today! Our thoughts and prayers are with you!
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Lili1964. Thank you so much for all that good information on TNBC. It really helped and much appreciated that you took the time to put it on the board.... -
I just wanted to clarify a point that LiLi made about radiation for TNs. One of the reasons that docs use the three-pronged approach for treating TN is that hormonal therapy and targeted therapy, like Herceptin, are not useful. Surgery/chemo/rads are the available tools. Radiation is used because it is complementary to chemo - not everyone has a complete response to chemo, whether neoadjuvent or adjuvant. Chemo does not work for everyone, whether TN or hormonally positive. During surgery not all breast tissue can be removed - there is usually 1-2% remaining. Radiation is used to the chest wall, skin, that 1-2% of breast tissue, the axilla, and other nodal areas that are not surgically removed as an added insurance for TN. As always, you have to weigh your risk tolerance, combined with the medical advice you are receiving, in determining whether or not rads is desired or required. -
LgK and Milane - Good Luck with treatments today. Good Luck to others as well that may be approaching the chemo bar today for their cocktail. May your side effects be minimal! -
Milane, you and I are at a similar place in our treatment. I had my port placed 4 days ago and start chemo the day after tomorrow. Fear and anxiety are my new norm... we will get through this!!! -
delayed treatment #3 today until next week b/c WBC are too low at 1.1....neutrophils only at 300...MO said to keep low profile....ugh -
lgk - sorry for the delay. It must be disappointing to get all psyched up and then not be able to get chemo. Hang in there and stay away from those who are germy. -
lgk, I am sorry your chemo got delayed. Your. WBtC is low even with the Blood Builder?
Milane and Uds, something that calms you a lot is if you ask for some type of anti anxiety medication the day of the chemo. I am anti pills and medications but now with this treatment I was so nervous that I requested something to calm me and it did a great job. And the ladies in this board also mention that Ativan, which is what I had, helps with nausea!
Don't get scared. It is basically one poke, like going for a vaccine or flu shot. The chemo does not hurt at all and you will notice that people in their second chemo, if you see any at your infusion centers, are talking and exchanging useful information.
If you happen to see anything, the most minimal thing that makes you scared, close you eyes, put some music or dvd. Don't let anything bother you or frustrate you that day. Chemo day is your day, for you to focus on getting all those cancer cells be killed. Focus all your energy on that. You will do fine and we are here for you. Drink a lot of fluids before and during chemo. Be good to your body. -
Relocated – I, too, am so glad you are feeling better! My nausea issues were handled promptly on Saturday by MO on call but feel like I’ve been hit w/the worst flu of my life since then w/body aches and headaches. I’m thinking this is more an aggravation to pre-existing issues…not much that can be done but I hurt. I’m now on day 6 and still not able to work. I’m too weak to even think of driving! And nausea set in again this morning so I moved back to taking Lorazepam since that helped – and since I’m not at work, I can sleep. Wish I could just sleep this junk away once and for all and get back to my life as best as possible.
Lgkgde13 – sorry for #3 treatment delay. I still haven’t found a headscarf either I’m comfortable with…thinking I’m going to be more with hats and wigs. If scalp too sensitive for wigs, well then I rock the hats, right? Or go bald (not practical in WI in winter, though).
2timer – you’ll get many differing answers to your question of “cumulative”. Most MO’s say there is no rhyme or reason to how you feel after each treatment. Some feel there is a cumulative component and others don’t. You may feel great for 1 or 2 and feel like the world has crashed down on you for your other 2 treatments. Just no way to tell. Don’t dwell on it; do what you’re doing and just take things one day at a time.
I did want to mention your water intake….my MO said a gallon of water is excessive and unnecessary. Drinking 8-12 glasses of fluids a day is sufficient to flush the chemo out of the system and saves you the constant trips to the bathroom. I know this because I asked – and was fully prepared for the “1 gallon a day” before and after chemo. Glad I took her advice….kind of hard to rest when you have to keep running to the toilet! Just thought I’d mention it; you do what you feel is best for you.
Here is something I haven’t read often that my MO asked if I’d be interested in trying when we met prior to first infusion. She said “we are in cold and flu season and you are suffering from a cold already – which we can deal with and still keep chemo scheduled today. However, would you be interested in taking a Probiotic to assist in not only GI issues, vaginal issues (keep yeast infections at bay!) but also help boost the immune system to TRY to keep the colds and viruses from settling in. If you do this, you need to make sure you get the refrigerated Probiotic because it works better”. I said I most certainly was – so she told me to pick it up at any pharmacy. I HAD TO GO TO THE PHARMACY COUNTER AT WALGREENS AND THEY GOT IT FOR ME (they had stuff on the shelves but my MO specifically said “refrigerated” so ask at the prescription counter for it) – I chose Florajen. And it has kept me regular since chemo was administered. And I’m all for it if it keeps colds and viruses from attacking me when my defenses are down. Just thought I’d pass that on to anyone who might be interested.
SuckitBC – have you tried Benedryl before going to bed? My infusion nurse told me this works well for many patients suffering from the steroid effects.
Travlmom – that is great news about being BRCA negative!!!!!
What is it that you did NOT do as directed w/your meds after the first infusion? Was there any specific reason you did not follow the med schedule they gave you?
Good luck to you tomorrow on your next treatment. Pain management….yeah, I hear you there (although I believe many of my pre-existing issues were horribly aggravated by the chemo or Neulasta – whose to know?)
May your SE’s be mild or non-existent! My thoughts and prayers are with you.
Headeast – so glad your stomach is getting better. Mine has worsened again, having stopped the Lorazepam and back to Compazine. Had to go back to Lorazepam this morning as I was running to the bathroom to be sick shortly after waking up so no work for me today, again! And any food I eat makes me want to vomit – wish this would just end already!
SpecialK – just wanted to make a note here….my knowledge in cancer in general does not extend to what you know (and you have a very clear knowledge as well as family members in the field to help you understand much more than I could ever know). My description was in very simple terms; perhaps a little more simple than my true knowledge, but what I felt important to get across was that it is important for each women to discuss these issues with her medical team. There are reasons why one MO would decide on something and another would not – likely because no 2 women are the same nor are our cancers. I was told, after my final pathology, that radiation was ruled out, period, in my circumstances. I do know that there are times it is used in TNBC; I just don’t know what determines when it would be used. So thanks for clearing that up.
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Thanks again to all of you for your input. You make things a little brighter for me. I will be seeing my new MO at 1:00 and feel pretty ready for it. I have a lot of questions many from visiting this board and you sharing your thoughts and ideas. I am sure I will find out when treatment will start and when to have my port inserted. It is interesting to know that treatment starts so soon after it is installed. Are you put under for this procedure or is it a mild sedative?
I had a massage yesterday and I have to say it was very nice. I am going to utilize all the options for comfort and peach I can get like massage, acupuncture and yoda if I am up to it. The facility I am going to offers all of this. I hope to go next week to get a few things that the Seattle Cancer Care offers like free wigs, scarfs and hats. Should be a reality check outing for sure.
I cut my hair a lot shorter last week and it is pretty interesting as I can see the shape of my head better so it shouldn't be such a shock...who am I kidding, right...it will be a shock I am sure...lol.
I will be praying for better days for all you ladies on this board and thank you all so much for your guidance, support and positive input...blessings to all of you...more to come...
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