Calling all TNs
Comments
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How many of you lovely ladies have had or are having neupogen or neulasta during your treatment. My oncologist has suggested dose dense AC/Taxol - 4 rounds of each 2 weeks apart and I have to give myself neupogen shots for 5 days of each round. Any input/comments would be appreciated!
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I haven't posted in a while. Last chemo was 8/28. My how the time has flown. NOT! I just had #11 of 33 radiation tx. I am 6 weeks out from a re-excision for wider, clear margins. Earlier this week, had swelling start in R breast. RO examined, said is most likely a seroma, and nothing related to rads. TX earlier today, now is pretty pink, bordering on redness, very swollen, and hurts. RO and LE OT, both suggested that Drs could drain it, but would probably return. Anyone else suffer with the seroma, and how much should I endure, before going back to BS , ask them to drain it. Of course, the situation is trying to worsen on Friday, the craziest day at doctors' office. Advice?
BTW--for those that saw my post several weeks ago RE: thyroid biopsy: had it done on Monday. Procedure was way less than anticipated. Still have minor throat swelling, and bruising. Results were benign. Yay! To quote my DH: ' I love that word!'
Hope everyone is looking forward to a weekend, and praying for healing and minimal SE for all. Thankful I found these threads to rant, glean info from, and just generally feel a community. Sometimes hard for friends and family to deal with my negative thoughts, isn't it? -
Adagio - re: Neulasta injections – I had 1 neulasta shot 24 - 48 hours after each chemo treatment (CT x 4). We have visiting nurses that will come and teach you how to do the shots. I thought they would actually do them for me but apparently I could only have 3 teaching sessions - I required 4 shots. So, for the 2nd shot, I figured I might as well do it myself as I was going to have to do shot 4. With the nurse watching, I gave myself the shot in the stomach. It was no big deal really. So I also gave myself shots 3 and 4. However, 5 days in a row for 4 times is certainly a lot more. But, I guess if you can do one, you will be all right for the others. Do you give the neupogen shots in the stomach? If so, I don't know about you but I can "pinch a few inches" of stomach and really didn't feel a thing.
luvBngGma – first of all, congrats on the benign thyroid biopsy! As for the seroma, I had it after my Mx, but I did not have Rads so hopefully someone else will chime in, too. After the Mx, the visiting nurse removed a lot of the padding the surgeon had put on but I think that was to keep the fluid buildup down. I wasn’t going to get it drained but it got so bad, I had trouble putting my arm down by the side without irritating the skin. Also, when I moved, the fluid would slosh around and started to make me a bit nauseous. At the time that the BS drained it, my chest was still numb so I really didn’t feel anything (unlike you, since you are sore from the rads). I did have to get it drained a second time (much less fluid) but that was all.
Doreen
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Titan - I agree with you. I feel the flow of conversation and companionship last couple of days. Annie, have fun with Mandy. It should be a wonderful time to reconnect. Navy Mom, holding your son in my heart too. Adigio, I had to go back to cancer center day after tx to get Neulasta shots.
I ask the question, too: can we not be donors after CA or Chemo? I never thought of that.
Thnking of all of you who are going through yet another set of chemo. Wish we could hear from Inmate.
My drain tube feels like it wants to come out. I don't see surgeon again until next Tuesday. Yes, Friday afternoon is no time to try to see a doctor.
I'm trying to clear out my stash of fabric by making lap quilts for a kids camp. However, pulling out all that fabric makes such a mess that it looks like my stash is growning rather than shrinking. (what a tiny problem this is)
Jan
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Short video of my husband carving pumpkins. Very cool.....
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Susan - That is one cool video! I love it. Does he do other carving the rest of the year? You both have impressive talent. Thanks for sharing. Jan
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I know that we can't donate blood...makes sense we can't donate organs either..but you would think maybe some organs..like eyes? ah well..that is probably off limits also...
I had neulasta in the arm after each chemo...caused me some flu like symptoms 24 hours later..didn't like that shot but my WBC was always perfect so I guess it did its job
Saw the bs and the onc's PA today so i got felt up 3 times...everything went well..ask for the vitamin Blood test so had that done also. Actually the PA was pretty knowledgeble about tn...asked about the ovarian-tn connection...really didn't get any firm answers...I told her that I really didn't want to have to have the ovaries removed unless necessary. she said that the jury is still out on the connection..so many types of BC...she did say though that the ovarian cancer/breast cancer connection was for all breast cancers not just for tn's...it get's so confusing sometimes.
Navy...thinking of you and your upcoming test and your son being deployed...rough time for you lady...hoping everything works out ok.
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Susan - great video! Wish I was that talented!!
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Just finished my last round of AC...moving on to Taxol. These steroids give me such a high, I hope I can get some sleep tonight. My oncologist was quite happy with my blood counts and feels my tumor is shrinking. Maybe I am on a high from that news and not the steroids.
BernieEllen: thanks for the laughs. I too was craving chocolate cake bad! I am not a real sweet fan so that was strange for me.
Txjunebug: I too was thinking how am I going to celebrate Christmas when I am going through Chemo. Well, I am going to do it up big. Haven't told the DH yet. Ha ha
Navy mom : I have son's too, ages 23 and 27 but they are not in the service. I feel for you. But you can get through this. We are here for you!
English Rose: thanks for the tip on the Sept. site. I will check it out!
Sugar 77: cute pictures of your babies!
Cyber hugs to you all! -
BernieEllen - where do you come up with all these stories? They are great. Thanks. We all need to laugh.
Finally got with with my surgeon. He apologized for scaring me with his message. He actually had some good news. The oncologist had called him and told him about new studies that showed I really did not need to have the surgery to remove the remaining lymph nodes. She said studies showed that since it was a very small cancer (5mm) in the auxilary node that chemo and radiation could take care of it. I am supposed to call her tomorrow to discuss with her.
I got a new haircut today -- a good bit shorter than I usually wear it. I guess trying to get prepared. But, I'd been wanting to try a shorter haircut, just worried I wouldn't like it. Figured I might as well try it -- what did I have to lose? I do like it. Speaking of losing -- how many chemo treatments before hair starts to fall out?
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Hello 5th Sib - So glad the surgeon's news was good news. With AC, my hair started falling out after the second infusion. I was actually relieved when it all fell-out as it actually hurt a bit while it was falling out - It reminded me of the way my head felt when my mom would braid my wet hair at night and then take the braid out next day.
Best wishes
Sherry
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Reality - thanks for the info. I was thinking that was what I had heard before. My beautician said that when it started coming out I might just want to go ahead and shave it all off. Anyone do that?
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Sib - lots of us shaved our heads when our hair started falling out. I think it is usually about 16 days from first infusion. I remember my head got all tingly one night, and DH didn't believe me when I said it was going to start falling out - and it did, the next day. After a few days of mess DH just shaved the rest off. I think a lot of us feel good about having control of when it happens. It was nowhere near as traumatic event as I expeced it to be.
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5thSib,
My hair started to fall out at the second infusion. Had it cut into a pixie which I kinda liked. But within a week, it was coming out too. You get tired of all the hair all,over the place. S we shaved it real close to my head. My kids said I looked like Demi Moore when she did that movie. (Forget the name) just had fourth infusion and its time to shave it all. Will do that this weekend. It's so hard cause when I look in the mirror, I see a cancer victim! But I tell myself it's temporary!
Good news on your surgery. Keep,us posted! -
In the Amazon rain forest, three explorers were walking. One was
Irish, another English, and the last American. Soon, they came across
a tribe, and the leader of the tribe told them that if they wanted to
pass through this territory, they had to pass the three caves test.
The explorers agreed and asked what the three cave test was.
The leader of the tribe took them to the caves, where he said, "Inside
the first, there are three bottles of rum, each 100 years old and said
to be toxic. You have to drink one each. In the second is a lion with
a thorn in his foot. You must remove the thorn. In the third is a
woman who has never been satisfied, and she must be satisfied."
The three men were hesitant but could not back out, so the American
went into the first cave, drank the bottle, and died soon afterward.
The Englishman was second. He went into the first cave, drank the
bottle, then went into the second cave. There was a lot of commotion
and roaring. No one emerged from the cave.
Lastly, the Irish man went into the first cave and drank the bottle.
He went into the second cave. At first, there was a lot of commotion,
and then there was a soft purring sound. Then he entered the last
cave. Two minutes later, he came out puzzled and asked, "Where's the
thorn in the woman's foot?" -
Good morning Ladies. Message from Inmate -
She asked me to say that she is thinking of you all and will be back posting soon.
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browerl: Congratulations on being done with chemo! That's great! Woo hoo!
Re. hair, I cut mine really short before chemo and then had my husband shave it off as soon as it started falling out (about 18 days after first FEC). It just becomes a nuisance having it block the shower drain, lying all over the pillow in the morning etc. The hair thing has actually never really bothered me because I have a really great wig which isn't uncomfortable and is quite similar but much nicer than my real hair. And it makes getting ready in the morning so much easier. None of this faffing around with blowdryers and straighteners!
As Gill said, I think for many of us it's about taking control. And at no point should you look in the mirror and see a cancer victim. Look in the mirror and see a brave and courageous woman giving it her all to fend off a bloody horrible disease!
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English Rose - very well said. I like that about looking in the mirror and seeing a brave, courageous woman giving her all to fend off the cancer!!!
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EnglishRose: I agree with adagio - nicely put.
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txjunebug: Three years ago, I started chemo on Dec. 8; had treatment #2 on Dec. 22, so I can perfectly understand how you are feeling about chemo during the holidays. To be honest, I rather liked having the whole family gathered round as I went through those early treatments; and lucky for me the SEs were very tolerable. Still, I did not try and do all the things I would normally do -- I gave myself a rest that year! My 2 sons (aged 17 and 20 at the time), chopped my hair and buzzed my head on Xmas Eve. DH shaved his head too. I still have photos of those moments which, believe it or not, I treasure. You will surprise yourself with what you can handle --and even celebrate -- through this journey. As for the trial, it's good to know they are doing that. TC is a common treatment for those at stage 1 with smaller tumours and no lymph node involvement. Several women here have done it. AC-T is a more aggressive treatment... and the A is not recommended for anyone with a weak heart. That's why they do MUGA scans of the heart before and after. The long-term SEs of chemo can sound horrendous, but remember they are listing all possible complications, not necessarily what you will experience! I understand why your onc would consider you a good candidate being stage 1. I recommend a frank conversation with him/her about the trial objectives, what to expect, drug SEs, etc. One great thing about being in trials is they will follow you closely... and for a long time afterwards.
Sugar: Your daughter looks like such a sweetie!
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Hello to all - 'just got home from port-installation. Doing well, but in pain, so I will write this brief note and join you tomorrow. I just have to pass this along. I have worked since I was 14, with only two years off, so I decided to apply for Soc. Sec. Disability. A determination was made in SEVEN days! I was definitely approved and will receive some back pay!!! If you go to the Social Security Admin. Website and select disability, you will find a list of disabilities that are on the "Speed-Processing List" due to legislation in Congress. Mets of any kind will do it. I just found the message on my voicemail that I was approved. I waited to apply as I thought it would be a bureaucratic mess - It definitely was not. I was treated with kindness and compassion - I was so relieved.
Love you guys,
Talk with you tomorrow.
Sherry
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Thank you Luah! I had several long conversations with the senior research nurse for my MO. MO is out of town. I feel like I made a good decision to join the trial. I'll either get TC or AC-T followed by radiation.
5thSib - I completely understand the concerns with the hair. Still don't know if I'm brave enough to shave my head. Guess time will tell. When do you start chemo?
Today was a high stress day. The reality of chemo started sinking in. Have port installation on Wednesday then Friday is an all day at the cancer center/MO office - Chemo class, MUGGA scan, lab work, and wig shopping. First chemo treatment is on the 16th.
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Txjunebug - a lot of the anxiety for me was the unknown. I didn't know how I would handle treatment, how I would feel etc. Luckily I handled it fairly well! Best of luck to you on your first treatment!
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Hi all,
Celebration!!!! 1 year past radiation!!! Yippee...and Walked in a Race for the Cure on Sat! it was awesome, powerful and being around others who truely understand...made me feel not so alone..
Its been a while since ive written on here, but I have a couple questions? I go for a 6th month checkup and I am to have my first chest MRI...what does this look like, will i have contrast with it? Also I'm have constant pain in my left hip..especially at night when i lay down..this has been going on for a few months. I contacted my Dr. and he is going to do an x-ray...does this sound sufficent to you? will this show if there is anything there? I feel like i always have aches and pains constantly so i don't know if im over reacting..I'm fearful if i don't react then it could be something that I have let go...I feel like I'm strange because I've been have anxiety not having any scans...I think with us TN gals we should have the option, I want one each time i have a check-up...i know, extreme and i know not possible, but for my peace of mind it would help...sorry to go on, but feeling the stress of not knowing...does everyone get this anxiety right before check-up and after a months and months of not having a check-up...
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We have discussed the scan thing before...and I definetly think if we want one we should get one but I have some cautionary advice here...and just my humble opinion only.....but why have a scan if you are feeling good? I can understand having a scan if there is any issue at all..but well for me..I feel great...having a scan would put me into such great anxiety I don't think I could take it...
ah well..I'm supposed to have a tooth pulled and have put it off...just not in the mood for any type of medical procedures at this point...so call me chicken
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Reality - that's awesome about your disability payments - you deserve it for sure.
I am having my first chemo on November 20th, and I am dreading it - however, reading all the great stories on here are a big inspiration and encouragement. I am going to try the ice on my fingers and toes to help with the neuropathy from the taxol. My oncologist didn't mention a port for me, and when I asked about it, she said if I wanted one I could have it - not quite sure what to do in that regard. I only have 8 treatments to get through and I guess my veins are OK, although she didn't check them at all.
Do you know what medications you are going to have thru your port?
I did appreciate your honesty in the e-mail you sent me especially about the radiation - I still have all that ahead of me.
Keep posting here, because you have a wealth of information that many women can learn from - every piece of information helps us all make better informed decisions regarding our treatment.
Hope your port site feels better soon.
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Cancer-related fatigue (CRF)is an unusual and persistent lack of energy or sense of tiredness and exhaustion related to cancer or its treatment. It is different from fatigue of everyday life, which is often temporary and relieved by rest. CRF typically comes on unexpectedly, is not related to an excessive amount of activity, and usually does not improve with rest or sleep.
Coping with a serious illness like cancer requires a tremendous amount of energy and effort. CRF can impact your physical, psychological and emotional well-being. You may feel like you don’t have enough energy to keep up with your usual daily routine, including work and social activities, and even your cancer treatment plan. In addition, fatigue can affect your mood, emotions and concentration, how you feel about yourself, and your relationships with others.
Despite its prevalence, cancer-related fatigue is often over-looked, under-recognized and under-treated. Talking about cancer-related fatigue and understanding its causes can help you and your healthcare team identify ways to successfully cope with and manage it. In addition to the help your doctor provides, there are things you can do to take charge of your life and help alleviate your fatigue.
NOTE: YOU SHOULD ALWAYS REPORT ANY FATIGUE YOU MAY BE EXPERIENCING TO YOUR PHYSICIAN.
As each person experiences cancer differently, the same goes for CRF, which can vary in its unpleasantness, severity and the amount of time it is present. For some, the fatigue is mild and brief. Others experience chronic fatigue that lasts for months, or even years, after active treatment is complete.
If you are suffering from cancer-related fatigue, even simple activities, such as talking on the telephone, shopping for groceries, or walking across a room can seem like too much. Cancer-related fatigue can make you feel:
- Overly tired, shaky, exhausted, and weary
- Worn out, wiped out, listless, drained, weak all over
- Unable to concentrate, think clearly, or remember things
- Heavy in your body, especially your arms and legs
- Short of breath after light activity
- A need to stop in the middle of activities to rest
- Muscle weakness, leg pain (including difficulty climbing stairs or walking short distances)
- Depressed, emotional, impatient, irritable, bored, and/or anxious
- Disinterested in normal day-to-day activities
- Not like your “old self”
CRF can be challenging to treat. It requires understanding the underlying cause(s) of the condition and learning ways to manage it. Unfortunately, it is not always possible to determine the exact cause of CRF. Most likely, it is a combination of factors which vary from person to person.
The following are some biological, psychological and behavioural factors that may contribute to fatigue:
- Chronic pain
- Psychological factors (e.g., depression, anxiety, emotional distress, frustration, fear)
- Anaemia
- Sleep problems (e.g., insomnia)
- Hypothyroidism (i.e., inactive thyroid gland)
- Medications
- Hormonal changes/changes in metabolism
- Infection
- Pulmonary or renal dysfunction
- Oxygen level in the body
- Nutritional deficiencies (e.g., weight loss, dehydration, loss of appetite)
- Inactivity, lack of exercise, muscle wasting, loss of muscle coordination
- Co-morbidities (i.e., having other medical conditions in addition to cancer)
- Mental ability factors (i.e., difficulty understanding and thinking)
- Cancer treatments and their side effects*
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adagio--do you have the option of a PICC line instead of a port? I've had one of these and it's been really great.
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adagio - i had a port put in and was happy with it. I had 6 rounds of T/C. I am scheduled to get port out in December, and looking forward to it!
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I was very happy not having any scans after lumpectomy - I just wanted to move on and stay out of doctor's offices. Now I wish rountine scans had been done so I could have started chemo earlier for my "very aggressive cancer", as the med profs call it. As I have mentioned on this or other threads, thank goodness I developed a frozen shoulder. I did not complain about it for a couple of months - when I finally did, a bone scan was done that showed 6 lesions in lungs and mets to 3rd rib.
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