Starting Chemo July 2012

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  • roadwarrior28
    roadwarrior28 Member Posts: 301
    edited November 2012

    PAeaglesFan - I know what you mean about "soft and fine" hair. My hubby called me a baby chick today! LOL

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  • Marianne52
    Marianne52 Member Posts: 78
    edited November 2012

    Thank you for your help. I really appreciate your input. Have a great weekend. Marianne

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  • Maddie57
    Maddie57 Member Posts: 296
    edited November 2012

    Hi Marianne - Good luck to you - you will get through it!!! My advice to you is don't read about the SE's until you start, and then look at the threads for advice on whatever you get. You can ask on our thread anytime - we are only too happy to help. As my other chemo buddies have said -once you are through it, it seems to have gone quickly, and fades into a bad dream. Two things I would not be without, and would buy before I started - a heating pad for sore joints, and diaper cream for burnt "nether regions". Oh yes, and vaseline and cotton wool buds for your nose - it will drip a lot. Just gently rub around your nostrils with a cottonwool bud. Thinking of you and sending healing thoughts.

    Are any of you going for permanent implants soon to replace the TE's? I hope to go at the end of January and can't wait to get these TE's out. Have any of you has a unilateral mastectomy? If so - are you having a mastoplexy to match up to "Little Miss Barbie Boob" ?

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  • Maddie57
    Maddie57 Member Posts: 296
    edited November 2012

    Hi Ladies- I am not sure if I gave you this hair recipe or not- chemo brain!! It works on the hair follicles, so you will only notice results by week 3 - if you had hair! It should make the hair coming out strong and healthy, and is good for those DH's who have thinning hair. As an added bonus it appers to be great for your nails as well!!If you are estrogen positive - leave out the lavender, which apparently has natural estrogen in it.

    Miracle Hair Oil

     

     

    100 mls Grape Seed oil

    12mls Jobajoba oil

    10 drops Cedar oil

    15 drops Lavender oil

    15 drops Rosemary oil

    10 drops Thyme oil

    Vitamin E Oil 5 mls

     

    Part hair – rub hair oil well into scalp.

    Leave overnight.

    Rinse well next day, and wash hair.

     

    Results will only be apparent by week 3

     

    Notes

     

    I do not leave the oil on overnight – a few hours should suffice!!! If you do decide to leave the oil in overnight, I suggest you cover your pillow, as it will leave a greasy mark. The recipe did say one is supposed to apply the oil everyday, but I could not be bothered with this – just try and do it at least twice a week.

     

    The initial cost seems quite high, but the herbal oils will last for years, as one only uses a few drops at a time. Grape Seed oil is available at Health shops, but if you look in the cooking oils section of your local supermarket you may find it there for a lot cheaper. If you use this Grape Seed oil – add 2 mls of vitamin E oil to the mixture.

     

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  • teeballmom
    teeballmom Member Posts: 322
    edited November 2012

    Saw my RO this past Friday, my simulation is this Tues and it looks like he wants to start rads either this coming Friday or next Monday. I get 33 treatments. It all seems to be moving so quickly.



    Take care.

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  • melanieb
    melanieb Member Posts: 17
    edited November 2012

    EMily,

    Glad to hear that your return to work went well.  I hope tha you have a nice easy week this coming week!  Take care.

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  • melanieb
    melanieb Member Posts: 17
    edited November 2012

    Hi Susan,

    Something similar happened to me and I had a lumpectomy first and then a mastecomy.  I bought "post surgery camisoles" at Nordstrom's and they were great.  My surgeon wrote me a prescription and then my insurance covered them completely.  The brand is Amoena and they are super soft cotton.  They carry a few different styles and I think they all have pockets for the drains.  They also have a pocket and some stuffing that you can put in as much or little as you want.  I thought they were really comfortable and it made going out again much easier.  I wore lots of cardigans overtop of them and sometimes put them under "normal" shirts.  I also wore several shirts with wide necks and smocking at the top.  They were so stretchy that I could step into them.  It made it much easier to get dressed that way.

    Please know that you will be in my thoughts.  I am sorry to hear that you are having such a rough time.  None of this is fair.

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  • melanieb
    melanieb Member Posts: 17
    edited November 2012

    Hi Maddie 57,

    Hoping to have my surgery in early April to take out the TE and put in the implant.  I am waiting to do both the port removal and tissue expander at the same time.  I am having the other side "fixed up" to match (hopefully!). 

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  • emilybrooke
    emilybrooke Member Posts: 98
    edited November 2012

    Marianne - I had the following side effects while on AC: body aches (possibly from neulasta shot), fatigue, sore gums, depression (not only from this whole experience but the steroids did a number on my emotions), and headaches.

    Maddie - I am scheduled for my "exchange" surgery on Dec. 10th. Two weeks from tomorrow! I am looking forward to getting rid of the TE's. Plus, I see the surgery as a one step closer to the finish line, even though I still have Herceptin for the next year.

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  • Maddie57
    Maddie57 Member Posts: 296
    edited November 2012

    Hi MealnieB an emilybrooke - seems like we are all having our TE's removed soon. Let us all know how it goes. 

    Emily - how is work this week? I have added some more hours to my working day this week, and am absolutely finished now!

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  • suzilla
    suzilla Member Posts: 36
    edited November 2012

    Hello everyone!!! I hope everyone is going thru chemo with minimal side effects. I finished my 4 rounds of a/c treaments n am going to do my 2nd round of taxol of 4..... for me taxol so far is much easier than a/c but feel like if it comes and goes....anyone else feel this way? Does anyone have any advice for oral mucocitis? I havent gotten the sores in my mouth like a/c but i do experience dry mouth, swollen tongue, n heartburn..... any advice? I was given the neulasta shot after each treatment but began to experience excruciating bone pain that lasted more than 10 days....so my onc. Said we were gonna try the taxol this time without neulasta... i was doing dose dense but without neulasta it might delay my treatments by a week so instead of every other week for treatments it would be every three weeks depending on my blood counts. Does anyone know if blood counts drasticalky drop with taxol like a/c? Should i be worried about not taking neulasta?

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  • virginiab
    virginiab Member Posts: 205
    edited November 2012

    Hi, Suzilla--

    I did not take the same drugs as you, and I was on a 3-week schedule to start with, but I objected to the automatic use of Neulasta, and my MO said we could just wait and see the results and the worst case would be that I would come in for chemo and instead have to start a series of Neupogen injections with chemo delayed for a week. Well, the result was that my blood tests came out okay enough to do all of my chemo right of its 3-week schedule.

    It seems pretty harmless to try it without the Neulasta and find out how quickly your body bounces back from each round of chemo. Best wishes for great results!

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  • melanieb
    melanieb Member Posts: 17
    edited November 2012

    Hi Suzilla,

    I did T&C together, so my experience is a bit different.  But, I used Biotene mouthwash and it was wonderful.  I also switched to a gentle toothpaste and that seemed to help with the mouth issues.  They never gave me Neulasta.

    melanie

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  • suzilla
    suzilla Member Posts: 36
    edited November 2012

    Thank you ladies!.....i really appreciate your responses and support. Will any biotene mouthwash do? Or do i get the one for dry mouth? I get my second taxol this wednesday. The left side of my jaw feels i have been punched in the face.....is this a side effect too?

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  • virginiab
    virginiab Member Posts: 205
    edited November 2012

    Suzilla--

    Well, I can answer the Biotene part of your questions (no experience with Taxol)-- the mouthwash I used is Biotene Dry Mouth Oral Rinse. I just used it at night, and it did help. During the day, I just sipped water or sucked on sugarfree Cinnamon candies I found at Walgreens.

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  • Melrosemelrose
    Melrosemelrose Member Posts: 3,018
    edited November 2012

    Suzilla- Biotene also makes a dry mouth gum that will help keep your mouth moist.  You can buy it at Walgreens.  The sore jaw could be joint pain from the chemo or it could be that you are clenching you jaw at night and not know it.  If you are clenching your jaw at night, you can get a night time mouth guard.  I have TMJ and know how painful jaw pain can be.  I used to wear a dentist made mouth guard to help with that.  I also used to take Motrin for the pain and applied warm compresses to that jaw area.  You may want to try eating soft foods for a little while to help minimize the pain.    Chemo can be a very stressful time.  You may want to talk to your onco about the jaw pain.  Hope you feel better soon!!!

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  • Maddie57
    Maddie57 Member Posts: 296
    edited November 2012

    Hi suzilla - I also had very painful jaws whilst on chemo. I was never sure if it was the chemo or the neulasta injection that did it. The painful jaws lasted from the 2nd to the 4th day post chemo and then cleared up. Unfortunately Taxol does take a heavy toll on your white cells. Some people manage fine without the Neulasta injection, but the one time I didn't have it, my white cells dropped alarmingly. Are you sure the excruciating bone pains are from the Neulasta? I also had the bone pains - some from the neulasta, but the crippling ones were from the Taxotere. Taxol is very similar. The oncologist reduced my dose, and gave me hydrocortisone before every Taxotere infusion, and this hepled unbelievably!!!

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  • roadwarrior28
    roadwarrior28 Member Posts: 301
    edited November 2012

    Suzilla - have you tried Claritin before and after Neulasta? That really helped with my bone/joint pain. It was still there, but much less severe and definitely tolerable.

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  • _Ann_
    _Ann_ Member Posts: 769
    edited November 2012

    Just catching up.  Congratulations to those finished with chemo and moving on with surgery, rads, and going back to work.  

    Stride, I'm with you, I can barely remember some of the AC days.  That stuff kinda wiped my memory as I was having it, which was probably a blessing! 

    I have my 9th Taxol today (of 12).  I got a PICC line before the last one so today will be my first dressing change.  I'm hoping it doesn't rip off too much skin.  That sucker is stuck on there tightly!  But it's nice not being stuck for blood draws and IV's any more.  They should even be able to use it for the contrast push for my last MRI.

    Well since Susan had to go forward with surgery early I think I may be the last one to finish chemo in this group?  Anyway it is feeling good to be down to only 3 more (after today).

    Wishing a lovely day to you all.

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  • suzilla
    suzilla Member Posts: 36
    edited November 2012

    Hello ladies! Hope u r all doing fine thru chemo....well at least with the side effects...n thanx for all the replies. Well im not taking the neulasta n see how that goes my onc n nurse assured me that my counts wouldnt drop drastically to b considered neutropenic....whew what a relief...my blood counts were good yey! N yes, i did use the claritin and also hydocodone with neulasta but pain continued for more than seven days....it was excruciating. I also bought the biotene dry mouth mouthwash and gum and toothpaste. Thanx for all the tips, you are all so wonderful and a blessing!! I also spoke to my onc. About my jaw... he mentioned tmj....like u stated melrose...so he said to take motrin and to see a dentist for a mouthguard. Well i now have a question since surgery is close, so for those that have had mastetomies with axillary node dissection, have u had lymphedema? I havebeen researching and found that 20-30% of patients that get ALND with mastectomies usually get lymphedema....and i am worried.....any advice?

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  • roadwarrior28
    roadwarrior28 Member Posts: 301
    edited November 2012

    Suzilla - I think it all depends on how many lymphs are taken out - the more that are taken out, the higher the chance for lymphedema. I had a mastectomy with axillary node dissection and had 8 nodes taken out. My surgeon said my chance of lymphedema is very small. I had my surgery in May and so far so good. I see a PT that specializes in lymphedema just in case every few months and she measures my arms. I also do light weight lifting - I hear it helps, just start with unaffected arm first. If you want, I can give you my list of exercises, but definitely wait until your surgeon clears you.

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  • roadwarrior28
    roadwarrior28 Member Posts: 301
    edited November 2012

    P.S. The way I looked at it was...what other option do I have? Do you really want to leave in those lymphs and risk leaving in cancer? 

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  • SusanHG123
    SusanHG123 Member Posts: 414
    edited November 2012

    Ann-think i will be last to finish the main chemo. Have surgery 12 December. But, have to finish the final 5 Taxol beginning maybe 9 January if healed. The Herceptin will continue through next November. 

    2 weeks off chemo. Thought I would start to feel good, but really dragging. In bed by 8:30 last 3 nights. Still going to work--but harder and harder to get up and get moving. 

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  • _Ann_
    _Ann_ Member Posts: 769
    edited November 2012

    Hi Susan, oh I didn't realize you still had to finish Taxol after surgery.  It's 7:40 here and I've been ready to go to bed since about 5pm!  Yeah I can imagine getting up early would be hard.  If I have one day where I have to get up early, it becomes a very early bedtime that day.  I hope your energy improves by surgery time.

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  • natL12
    natL12 Member Posts: 135
    edited November 2012

    Suzilla = my dentist gave me a sample of the Biotene toothpaste and mouthwash...that's the trademark name on them...I've used that  ever since the first dry mouth symptom (had to buy more, a bit expensive but worth it to me).  They do the trick.  Nat

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  • natL12
    natL12 Member Posts: 135
    edited November 2012

    I've been off the board for awhile, waiting to post good news. Well, ti catch you up to date...6th and final chemo Oct. 30 the MO said "we'll be done".  I reminded him that the 1st surgeon said maybe radiation because of not being able to get clear margins all around. Went in Nov. 27 expecting MO to say good-bye.  Instead it was "the original pathology report was so ambiguous about margins, the radiologist and I have decided you must have rads."     Well, ok, I'm disappointed but not too surprised. Met with radiologist, he felt armpit, found a lump he didn't like.  So got marked up for rads, had the CT scan, and went in Nov. 29 to start rads.  Saw the new surgeon first, instead, and she said that the radiologist and she agreed that  the lump needed a further examination.  So, instead of rads yesterday, I had a biopsy and I'm waiting to hear that it was benign.

    Trying to think positive thoughts. 

    On a negative note...I had only one lymph node removed on surgery June 6. It was benign. After 5th chemo, I developed lymphedema in right arm and have been seeing Ot/PT for massage,exercises, bandaging, etc.  It has responded well, and am now weraing a sleeve and glove. Expensive, inconvenient, (but not nearly as much as bandaging was). And possibly forever.  It's nice and warm this time of year. Maybe I'll be over needing it come summer.  But, if not, I'll put up with it. Do my exercising in an air-conditioned gym...

    Still trying to think positibe thoughts.  Nat

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  • Maddie57
    Maddie57 Member Posts: 296
    edited November 2012

    Hi Ann - glad to hear the PICC line is making the blood draws more bearable. I know you hated those!!! Good luck with your last 3 chemos - the finishing line is in sight!

    Nat - you poor thing. I sending positve thought sfor your biopsy results. Will rads have any effect on your LE?

    Susan - I thought you were going to take some time off before your surgery to build yourself up a bit! Take it easy. Unfortunately 2 weeks isn't enough before you start feeling a bit better. It is more like 4 weeks before you think - hey I am a bit stronger!

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  • melanieb
    melanieb Member Posts: 17
    edited November 2012

    Hi Susan,  It does take a while to start feeling better after chemo.  I remember after about a month I realized that I could go up and down the stairs in my house without my joints hurting.  It's such a hard thing for the human body to endure that it takes a long time to heal.  You will be in my thoughts.  Hope your next surgery goes well.

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  • melanieb
    melanieb Member Posts: 17
    edited November 2012

    Hi Suzilla,  I had 4 removed in April and have not had any problems. My doctors said that it is really important not to gain weight and to remain active.  Evidently those fators may influence who gets lymphadema.  There are also things you can to do reduce your risk like being careful about sunburns, cuts, burns, etc. on the affected side.  Of course I am typing this with a bandaged finger from a burn that caused a blister while I was cooking.  It's hard to be careful all the time, but you can do things to reduce your risk.  Good luck to you!

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  • boobzilla
    boobzilla Member Posts: 58
    edited November 2012

    Hey all, have not been on in a while. Went back to work and have been crazy busy there. Plus lots of other non-related things scheduled and happening. I had my last chemo Nov 6, and am feeling overall, much better. A little tired, but nothing like when I was on chemo. I had a 2nd MRI the day before Thanksiving (wonderful, right?), and saw my breast surgeon this week Wed. She confirmed that the tumor had shrunk enough for her to do a lumpectomy. I was glad to hear that, and not so glad to hear about the lymph node mapping test I have to do the morning up, to determine sentinel and possibly other nodes affected. Like many, I am concerned about lympedema. I had planned to lose some weight after this chemo and surgery stage, and am left handed (my left breast has the bc), and now I am afraid of doing anything after surgery with that arm. I have a sedentary job, and since being an athlete earlier in my life put on a few pounds. Since that is a risk factor for bc, I am trying to do all I can to help prevent a recurrence. The surgery doesn't scare me as much as the lymph node thing....

    Susan-I am sorry to hear about the change in treatment/bump in surgery-hopefully at least it helps you get rid of some of it earlier.

    Nat-wishing you all the best for biopsy results.

    I hope you all are feeling a little bit better after chemo, and that whatever treatment you have next is not as difficult. Positive thoughts all!

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