CMF treatment survivors and experiences
Comments
-
Hi CMF friends! How was everyone’s week? Ria - I hope your throat and infection are getting better and you are getting good rest. I think you are doing every two weeks? You know, if that is too much to handle, you can talk to your oncologist about every 3 week treatment. - it is an option. That is my schedule and I like the extra week of rest - it makes a difference and I almost feel “normal” energy wise and no neulasta needed.
Milo2018- thinking of you for Monday treatment😊
Hello to Kate and thanks for your continued encouragement to others!
As for me, yesterday I had #5 at the new oncologist near my parents in the Finger Lakes. The change of scenery out of nyc has been wonderful for me and not being home alone all day helps. So far this one is better than than last two - no dizziness or nausea. It is slightly different each time and I try to roll with it and stay relaxed. We (parents) are moving on Tuesday to the lake and off the dairy farm, so lots of packing around me as I rest and help when I can
0 -
Good Evening Inthegrey!
I finally feel like myself again. Tomorrow will be my halfway point!!
As much as I like the 3 week for the extra week to rest. Im deadset to be done with this (and radition by Dec) i want to celebrate 2019 cancer free
Im glad to hear you had less nausea this time around
0 -
Hello ladies!
I too am from upstate, NY! I just completed my first round of CMF TODAY via the port that I didn't want but ended up needing. And so far, I just feel a little woosey and tired...but I was tired today anyway prior to the infusion. So I'm really hoping to ride this storm as positively as I possibly can. But man, what a ride this has been! And I'm not even half way through!
Following chemo 6 times/3 weeks apart, I'm set to have daily radiation for 5-6 weeks. On top of the weeks I already took to freeze embryos. Or the week off for an infected expander. Or the failed attempt to get a vein for infusing my original start date for chemo. Or the week I took to get my port! When you have cancer...YOU ARE ON TOUR! And nothing is or can be planned.
Kate, I too had a seroma/staphylococcus infection which knocked me down for about a week with flu like symptoms. I ended up having another small procedure so they could wash the site and replace my expander, so the infection didn't hold up my pending chemo any longer. Same story, same drugs-ugh. Been good ever since though, thankfully. But that infection/procedure was a tough point for me—if not the toughest point for me...because it was just one more thing to contend with and my level of “fed-up" increased double-fold.
But I need to say this—that when presented with chemo options...for me choosing CMF confidently was a no-brainer and this thread helped me feel that way. I realized quickly how many people in my life were invested in my treatment and recovery...and I received so many loving, yet unsolicited opinions on what I should do. I knew in my heart...CMF was the path I wanted to take. I went to Dana Farber in Boston for second opinion, and as some of you said...AC, ACT just seems to be the crowd preference. But the physician at Dana Farber stated that SKMH does still have the preference for CMF...and that some oncologists across the board still prefer it. Good enough for me. And I felt researching/choosing my chemo gave me the slightest bit of control in an uncontrollable situation and it's made all the difference in keeping my head in the game.
I'd like to keep you all and any future readers up to date as I progress through this. Again, thank you to all of you that have written in and given us all glimpses into what to expect. I love reading the goodbye posts and knowing how capable we all are of moving on. I look forward to the day.
0 -
Welcome to our “club” Erin1980! You have been through a lot already and sound strong. Where in upstate are you if I may ask? I’m glad our forum has helped you feel good about your choice of CMF and that is what was an option for you. That was great the oncologist at Dana Farber was honest with you. We can all help each other, which is nice to me. Keep us updated 😊
0 -
Hi all CMFers. I did mine 17 years ago. For me it wasn't easy, but doable. My big problem was neupogen. Back then it was new and one dose fit all. After a few unbelievably bad reactions to it, the dose was lowered and it had the same good effect of increasing my white cell blood count. So my advice would be to say something if things aren't going too well.
BTW I live in San Diego but I lived in Cooperstown, Poughkeepsie and Chappaqua NY before college.
0 -
Hi Everybody,
Here is my update from after my vacation in Raquette Lake. First I’ll say that everyday I was gone I had drainage and dressing changes and my doctor called in an extension of the Bactrum for another 10 days. I saw my oncologist who took one look at my vacation weary breast and after squeezing more fluid out she called my surgeon and told her I needed to have the area looked at immediately. Saw the surgeon and she said the plan will be to schedule surgery to open up the area, debrid it and pack it so it could heal from the inside out. I was so discouraged at this point I wanted this over now. Had the surgery two days later and came home with a packed and draining incision. Still dont know what the cultures showed this time. My surgeon is currently on vacation and my follow up with my surgeons partner is 7/30. The PA at my oncologist looked at the area today and reassured my friend that the dressing looked good and that was a big relief
I write this saga so anyone that has an infected seroma can read the process of getting rid of it and I’ll keep you all updated. The last 5 radiation boosts I blame for this but who knows why it happened.
Kate
0 -
To all undergoing CMF: I had my first breast cancer in 1998 and following a simple mastectomy had 6 months of CMF on a two week treatment, two week off schedule. I was working part time and continued working through the chemo. I also showed horses, with a lot of help from friends while on chemo. I worked MTW, stopped on my way home from work on Wednesday for infusion then rested through the weekend unless I went to a horse show. I did have bloodwork before the two week treatment and when my white cell count was too low I did end up having to give myself neupogen shots. I am distressed that I ended up with another round of BC in the remaining breast but this one is ER/PR+ the first was not. Scheduled for a mastectomy on the 31 and hoping my oncotype is low enough that I don't have to do chemo, but if I do, I will do it again gladly since I credit CMF for 20 cancer free years. Best wishes to all of you during your treatment.
0 -
Thanks for posting Goodwit. Good luck with surgery. It’s very encouraging to hear that CMF was so effective in 1998 until now. Please keep us up to date on how your surgery goes and how you do with treatment.
Wishing you the best results,
Kate
0 -
Kate, I'm so sorry you have had the "medical mystery" saga! Hoping it resolves soon.
Erin1980, when I was first diagnosed a friend who had been through it told me that "cancer is a major inconvenience". I thought that was odd as wasn't it mainly about being a terrifying life and death disease? The answer is yes, but also yes! It is impossible to make plans, you have little control over prioritization -- when a doctor says drop everything and come in, you do. It is indeed a TOUR, haha.
My levels of "fed up" ness have been high at two points during chemotherapy. Point #1, after Cycle 2 I caught a GI bug that landed me in the hospital for two days and a night, and was just utterly miserable. Safe to say I now understand how a person could die from diarrhea. Point #2, turns out I had a salmonella infection the last time I wrote in, after cycle 6, which meant I just felt worse and worse for days on end. That was an important lesson for me in calling the oncologist's office when things don't seem right -- I never had a fever, just moderate diarrhea and the feeling like someone was ripping my guts out of my body frequently. I just felt BAD. Even though by the time I got it cultured it started to improve on its own and I didn't need further treatment, just knowing that it wasn't the chemo alone making me feel that awful made me feel psychologically much better! I wasn't sure I could face that feeling even two more times. I seriously laughed in glee and told the overnight fellow who called me with the diagnosis that I was hugely relieved to have salmonella. Add that to the list of things you never thought you'd say, thanks cancer!
When I started chemo they said to expect that fatigue will be cumulative, hitting harder cycles 6-8. This has indeed been the case for me. I can get through the days at work, get my kids to bed, barely eat dinner and shower, then I'm out of commission. It's okay, I just have to adjust my mental models a little bit as to what I can get done. On the plus side, because I'm going to bed so early when I (often) get my 4:30am insomnia I just get out of bed and start my day. Not a big deal.
Treatment #6 started to feel like I was going to make it through, that the end was on the horizon, even with the salmonella incident. I think part of what makes chemo so hard is it lasts for so darn long, and from the outside people sometimes think you "are fine!" "look great!" and all those other things that make you feel alone in your experience. People wanting you to be normal when you know your life is radically changed. We are here together though, we're not alone.
Infusion #7 was yesterday, and I'm awake most of the night so far from the steroids they give. Again, not a big deal, just hoping for some good naps and not too hard a crash over the weekend, especially as my brother's family is visiting and I'd like to enjoy at least some time with them.
On the subject of headaches and hydration, the NP yesterday suggested that I add coconut water to my beverages for electrolytes. Even though I've been drinking a ton of water, she said that alone might not be enough and the headaches I get throughout the cycle are probably dehydration. Duly added to the fridge. Another good learning from yesterday's visit to MSK was that I had very puffy eyelids and watery eyes for 4-5 days in the last cycle, my MO said it could be that I have lost eyelashes, and that my eyes are having a harder time warding off normal things like pollution, dust, etc. She said your eyebrows and eyelashes might lose hair later than you lose hair on your head (my head hair loss was greatest in cycles 1-4 or maybe 1-5, it's definitely slowed and still not terribly noticeable as long as my part is sitting okay and I don't pull my hair back too tight), so that could be why it is new. Recommended cold compresses and saline eye drops (not visine which has something in it).
As for CMF versus other regimes, I was just thankful that I was candidate for what seems to be the lowest toxicity option. I trust my doctors and the entire MSK institution quite a bit to know what is right. Also, the recurrence prediction scores and impact from chemotherapy that come with the OncotypeDX test are based on CMF. And I am so thrilled to hear from some sisters who had it so many years ago. Goodwit, very best of luck with surgery, wishing for good outcomes for you.
0 -
Thanks for your update! I too am thankful for MSK being able to choose CMF. I think oncolgists should offer it as an option in addition to TC to all qualified candidates - let the patient learn and evaluate, especially if chemo is optional with moderate risk oncatype.
I’m am one week post #5 and it has been the best ones yet, which surprises me. I’ve had more energy too. I think my new surroundings staying at my parents at the lake is part of this. We moved here this past Tuesday. I’m so happy to away from my small 1BR apt. in the city. I hate nyc in the summer.
Enjoy your weekend all!
Kathryn
0 -
wow 2002chickadee this really struck a cord
“ from the outside people sometimes think you "are fine!" "look great!" and all those other things that make you feel alone in your experience. People wanting you to be normal when you know your life is radically changed”
I just finished 4/8 Monday and I hace been so stressed at work. July alone I had a hospital stay and developed phlebitis and have been very emotional and crying all of the time. So I decided to take this week off. (I have over 50 sicks days left) up until this week I was only taking my infusion day off.
My manager had the nerve to text and ask if Im ok.
I wanted to replay ‘Im fighting cancer you jerk’
I feel very alone
0 -
thanks
Also doing 8 treatments of CMF round 3 Monda
0 -
Wishing you the best and sending🙏🙏🙏
Thanks for the encouraging pos
0 -
Thanks for the posts on CMF.
Also at Sloan
3 rd treatment this Monday.
I noticed my hair really thinning this week.
Can you tell me about hair thinning?
When did it stop?
How noticeable is it.
0 -
💕💕💕🙏🙏
0 -
On CMF treatment 2
I noticed list of hair sheddding this week and am curious if it will continue at this pace
Thanks for your post
Also at Sloan Middletown NJ for Chemo every other Monday
Good to hear CMF is based on once score
Mine was 2
0 -
Hi MILO2018,
My hair did thin a bit and after chemo it started to return to normal. I don’t think anyone but me really noticed. Now, almost 3 months post chemo my hair is back to normal and I’m told the back of my hair actually looks thicker. My oncologist told me not to color my hair during chemo. I see her next and I’ll be asking her if she thinks I’m safe to do it now. I haven’t colored it in a year!!!
Best of luck to you,
Kate
0 -
I was told I could color my hair!!!
I’ll double check with Dr Minday❤️
0 -
yeah my oncologist said you can go ahead and color your hair if you want it all to fall out. She said it stress your hair. I’ll be curious to know what u find out.
0 -
I also was told not to color my hair by the nurses. Also wash only 1-2 times a week using cool water, not daily as I used too and not to use blow dryers or any heat ( flat irons,etc). This all stresses hair. I had some increased shedding the first few rounds, but it has gotten less after #4. I have thick, dense hair to begin with.
0 -
I have the same routine as inthegrey. Wash 1-2x a week. No stress on the hair.
I cant wait to color and style after this is all over
0 -
I will be doing round 1 of 8 biweekly CMF treatments on Friday. I will have the neulasta pod that will release on Saturday. I'm planning to continue to work full time at a job that is physically demanding. I do have intermittent leave in place in case I need it. My oncologist seems to think that I'm going to breeze through chemo and I'm really hoping he is correct. I've started hydrating now. Will take loratadine starting Wednesday.
I am 48 and postmenopausal. DCIS and IDC in left breast. I had a bilateral mastectomy on 5/25. I am stage 1a. No node involvement. Oncotype score of 27. Decision to do chemo was left up to me. I would never forgive myself if I didn't do chemo and the cancer came back so here we go.
0 -
Hi Nocyart,
Welcome to this group. Best of luck to you. Lots of good information here about what to expect and what others have experienced. This is a great group. Any questions you have I’m sure someone here can answer. I agree about having a choice, making it and not being able to even consider the risk of not doing chemo. When I was presented with information related to my breast cancer it was clear to me chemo was the route to take. Though it wasn’t always easy many of us have gotten thru it with minimal side effects that were controlled through trying things people in this group experienced and tried. Everyone experiences chemo differently but here is hoping you sail through it.
Kate
0 -
Thanks, Kate! I'll keep everyone posted.
0 -
Hello all, and welcome nocyart! I am super excited that this Friday will be my eighth and final CMF! (Assuming I don't catch the virus everyone else in my house has gotten this past week and get delayed. I am pretending this is not even an option.)
Hair loss definitely slows after the 4th or 5th cycle. My hair feels shockingly thin to me but my siblings and my mother claim they can't see it. My husband says he can see it a little. I can't entirely remember when they said it will start growing back but I look forward to it. I am seeing a dermatologist at the cancer center this week to address a rash that started last cycle and will ask him too. I'm participating in a study he's running about hair/skin/nail changes so I'm pretty excited to meet him despite wishing I did not have to.
For all those who are starting, I wish you as much of a peaceful journey as possible. The hardest thing outside of any incidents is that six months or so is a long time to feel the way you do during chemo -- not knowing if you'll feel well or like you're lying under a bus, feeling vulnerable to random illnesses, grumpy and tired and physically "off" so much of the time. I will say that going into treatment #7 I felt a big change in my mental state. I knew I was going to make it through. Going into #8 I feel positively giddy.
I also think trying to be active as much as possible has made a huge difference. In the first week post-treatment I try to take a short walk every day, even if it is just 10 minutes. By the third week I am doing a semi-decent workout. Yesterday I went for a walk and managed to do a run-walk instead, my heart was soaring at just the idea of running despite my plodding pace.
Happy Monday to you all.
0 -
Ok, I am starting my first treatment of CMF on Thursday. We are leaving for a wedding in VT (about 2 hr ride), immediately after my chemo. How long is the infusion itself? How did you feel afterwards? Any side effects? The wedding itself is Saturday evening. I'm hoping I'm feeling ok. I will be on this drug until the tumors I have grow or there are new ones (I am stage 4, and have CT and bone scans, every 3 months). I just got off over a year on Taxotere (horrible side effects).
Thanks
Lynne
0 -
Hi Lynne,
Count on about 2 hours plus or minus 15 minutes. I felt headachy, full headed and some coughing the first treatment. Nothing too serious. Tylenol took care of it. The chemo /steroids can be constipating so you might want to have some miralax or senakot available. They don’t work suddenly so you won’t be caught off guard. I’m not sure I could have driven 2 hours after the first treatment but I could have been a passenger. I think you’ll be fine.
Have a good time!
Kate
0 -
Thanks, Kate!
I am always the passenger on chemo days. I drive probably once or twice a week, and never more than 5 miles. I can handle those side effects, I hope it's the same for me.
Lynne
0 -
Round 1 of CMF yesterday. Neulasta is on board and should release this evening. So far no side effects but I know it's still early. I started loratadine on Wednesday and will take it at least until Wednesday. I'm drinking a lot of water. Rinsing my mouth often with water, salt, baking soda combination(I DO NOT want mouth sores!)
Is this the calm before the storm?
0 -
Hi Nocyart,
That’s great! So far so good. Not everyone has all the side effects we r warned of. Sounds like you are doing the right things to ward them off. If you start to experience any signs of constipation try the miralax and Senakot S. Once I discovered this regime I took them regularly for the days after chemo and that issue completely resolved.
When the nuelasta does inject you will feel nothing and only hear a faint clicking.
Good luck!
Kate
0
