Calling all triple negative breast cancer patients in the UK
Comments
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Hello Anne
Thank you for your post. I was so sorry to read that you have been having a difficult time, with your boiler and at the hospital. These appliances, such as boilers, are there to bring us hassle and it is absolutely awful when they pack up. We are so used to our hot water and central heating. Our boiler also packed up when I was going through chemotherapy and my husband, Raymond, had to give British Gas hell to get them to come out and repair it as an emergency. We were paying for their gold service but even so they wanted to take their time. Raymond said I was ill and that made them move! If it is any consolation, our washer-drier packed up when I was going through radiotherapy and travelling to Exeter in a heat wave every day.
What a time you had at the hospital. Six hours at a hospital is exhausting.
With reference to the parking, you should be able to get a free disabled pass for the duration of your breast cancer treatment. The Hospiscare nurses arranged all this for me when they first came to see me prior to my treatment. They arranged it through the local council and I got it in no time at all. It was valid for three years, but I returned it when I finished treatment. these things should be advertised. A patient does not want to be worrying about parking costs when going through treatment. With chemotherapy there is no knowing how long you are going to be at the hospital. It is a good thing to have Hospiscare nurses throughout your breast cancer journey.
I was sorry to read that you have a cough and I hope it clears up. Since you were breathless the oncologist was right to check it out and to order an x-ray and CT scan. We have to remember how toxic chemotherapy drugs are and every little symptom needs to be checked, to be on the safe side.
It is awful to have to traipse around hospitals along never ending corridors! I cannot begin to imagine how you must have felt having one cannula put in with a lot of pain and then having to have it taken out because it was in the wrong place. You must have been absolutely exhausted, especially after a late night trying to get the boiler to work and having a bad headache.
The good thing is that you had a happy ending with the CT scan and x-ray and that all was revealed to be well. Now you can go ahead with the second lot of chemotherapy and get that behind you. Just think ahead and think of Wednesday evening.
What a good daughter you have to have taken the initiative and started getting dinner.
I bet you were relieved that the heating engineer turned up and I hope you now have heating and hot water. Do you have a combi boiler? We have them in our apartment complex and some residents find it difficult to cope with them. The secret is to keep the pressure gauge at the required level and not to fiddle with it too much.
I hope you are feeling better today and will manage to have a good night's sleep so that you feel in good form for Wednesday. Rest assured that we shall all be thinking of you and that we shall wishing you all the best.
I was doing a bit of reading about the different chemotherapy drugs and read that cyclophosphomide (Cytoxan) and fluorouracil (Efudex) do not cause hair loss but that epirubicin (Ellence) and doxorubicin (Adriamycin) do. The taxanes, docetaxel (Taxotere) and paclitaxel (Taxol) also cause hair loss.
Have a nice dinner tonight and get plenty of rest and hopefully sleep tight. A cup of camomile often ensures a good night's sleep. I recently read that it was also a good anti-cancer preventive.
Let us know how things go tomorrow.
Thinking of you.
Sylvia xxxx0 -
Hello Jackpot (Gill)
I am just popping to ask whether you are having chemotherapy tomorrow. I was wondering how your niece was getting on.
I hope you are well.
Fond thoughts.
Sylvia xxxx0 -
Anne I feel for you. Why when it rains does it have to pour? Hang in there. I have a hot bronchial thing going on myself. You are not alone! A guy is here right now to get the air out of our heating system. Third visit. Hot water turns itself off in the night. You really ARE not alone! No hot water,no hair, no problem!0 -
Thanks for your replies everyone. Yes, I like my camomile tea, Sylvia, and I also recently discovered a lovely lemon and ginger tea!
I like your comment, susan 'No hot water,no hair, no problem!' You are right. I boiled a kettle so I could have a hairwash over the sink yesterday (I have a Number 3, so some hair is there) and managed to do it very quickly with just one kettle. So there are compensations to having little or no hair!
An update now: the engineer came and he managed to fix the boiler. It was a question of changing a wet fuse as there was a small leak. They are coming back on Friday to replace a part which should fix the leak, but the engineer reckons the boiler should be fine until then. So I am toasty warm now and the dishwasher and washing matching are on overtime, catching up!
About an hour or so ago I had a surprise call from my BCN to tell me that my neutrophils were a little low (1.7) and I was going to have to have injections five days after my next chemo for three days (or was it five?) I was expecting to have injections as I thought it was routine at my hospital, but apparently not. It's strange the oncologist didn't mention it yesterday but perhaps it's because she was too busy dealing with the other issues. Anyway, I hope this doesn't mean I am going to start having regular problems with my neuts. I think 1.7 is pretty borderline low (she said the normal range was 1.7 to 8.00 but I have never seen any figures before). Perhaps one of you can throw some light on this.
It's never simple this chemo business, is it?
Regards to all,
Anne0 -
Hello Anne
I was glad to know you like your camomile tea. I also like lemon and ginger tea, as it is very refreshing. I also buy Pukka teas and my favourites are three ginger, three mint and three green. They are all very strong and full of flavour. I keep reading about the benefits of green tea and curcumin and I have been drinking green tea for over eight years and putting turmeric, of which curcumin is a part, in hummus and putting it on my food. I know that orthodox medicine has not time for any alternatives, but who knows?
I was glad to know that you have got your boiler fixed.
You mentioned that your neutrophils were a little low and that you were going to have to have injections five days after your chemotherapy for some days. I do not know whether this is now standard, as very little under the NHS is standard and everyone will be treated as individuals. These injections were not being done when I had my treatment as far as I know but they probably do them now if they are needed. It is probably better to have them if needed rather than ending up with neutropenia and possibly having to be in hospital. I do not know about the range quoted but, if we go by them, you are just borderline. Neutropenia is a reduction in the number of neutrophil leucosytes per cubic millimetre of circulating blood to a figure below that found in health. A count of fewer than 1,500 per cubic millimetre would generally be accepted as constituting neutropenia. Many cytotoxic drugs used to treat cancer cause neutropenia. I cannot find any mention of the figures 1.7 to 8.0 but this probably somehow equates to the cubic millimetres.
The drug used to boost white blood cells is filgrastim (brand name Neupogen). It is used during cancer treatment. Apparently bone pain can be a common side effect which is treated with pain killers.
Anne, you might want to get the little book Understanding Breast Cancer that I mentioned. It is a good reference book. On page 153, under the chapter Drug Treatment (systemic therapy), it has all about the side effects of chemotherapy. The headings is Bone Marrow Suppression, and there is an explanation of how chemotherapy drugs reduce the production of blood cells in the bone marrow. These include white cells which help to fight off infection, red cells which carry oxygen round the body, and platelets which are important for blood clotting. It explains what can happen if these cells get too low. They are a lowered resistance to infection (white blood cells), anaemia (deficiency of red blood cells), bruising/bleeding (low platelets). Low platelets can cause nosebleeds.
I hope this helps.
I hope all goes well today and that there are no complications.
Take care.
Fond thoughts.
Sylvia xxxx0 -
Hello Anne again
I have just been checking back in the book I have just read, Breast Cancer Your Treatment Choices, at the chapter on chemotherapy, where it lists the downsides of chemotherapy, in other words the side effects, and lists hair loss, nausea/vomiting and neutropenic sepsis. We all know that we can try to prevent with hair loss by having ice caps and that there are good anti-sickness drugs to prevent nausea and vomiting, but I am not sure whether neutropenia is mentioned much to patients, especially in the UK. It could be it is mentioned only if there are problems with low white blood cell counts. Reading through this book it says that almost all cytotoxic drugs will cause a fall in the number of white blood cells, the neutrophils and lymphocytes. It also says that the drop in the number of white cells usually happens about seven to ten days after having the drug and the blood count will be back to normal a couple of weeks later. It further says most of the time the fall is not a problem but does become a problem if the drugs cause a really big fall, because white blood cells are the body's main defence against infection. It says in this case a serious infection can develop quite quickly and is known as neutropenic sepsis.
I can remember taking my temperature every day while on chemotherapy.
This book says that if someone who is having chemotherapy develops a temperature, feels hot and feverish and starts to feel unwell, they should contact their chemotherapy team right away to check they are not developing febrile neutropenia.
You should have a phone number that you can call 24 hours a day if you are worried.
I do remember being given a phone number when I was going through chemotherapy that went through to the oncology ward at the hospital. Thankfully I never had to use it.
Thinking of you.
Sylvia xxxx0 -
For Anne,
I think it was here on breast cancer.org where I read about the shots Neulasta and Neupogen and how the bone pain can be really unpleasant....but what works well is a Claritin tablet once a day. This is an allergy pill sold over the counter in America, don't know about England. Maybe it is all worth a bit of research? I'm no expert and for some unbelievable reason my blood held up through chemo so others feel free to chime in here. I carried Claritin around with me at all times out of being a big chicken! That and lidocaine cream for the port!0 -
Hi Sylvia
Thanks for all the info you posted. I have done a lot of research so have already come across much of what you mentioned. What I wasn't sure about when I posted was at what point the neutrophils are considered low (I think my BCN was guessing a bit). I have since found that my unit don't give the next round of chemo if you are less than 1.5 (I am 1.7 so a close shave for me). I also read that below 1 is neutropenia and below .5 severe/ dangerous.
The injections are called Filgrastim but also Zarzio. There are lots of possible side effects so I'm a bit apprehensive but it can't be helped. I'm going to see what others' experiences are of this drug.
Susan, you can get Clarytin here over the counter, in fact I have a packet, but I'm already taking an anti-histamine so I may not need it.
Regards all and thanks for your help. Feeling a bit unwell after today's chemo so off to bed.
Anne x0 -
Ok, I see Neupogen and Filgrastim are the same.
Anne x0 -
Anne, Just check the ingredients in Claritin vs your antihistimine. There is something in Claritin that magically stops the bone pain. I read one tablet a day. It's here somewhere in the discussion boards.....all the best.0 -
Ok, thanks, Susan, I will. I have an old packet (3.5 years out of date so will check on there) and pick up a new one.
Anne x0 -
Hello Anne
I hope you will start feeling much better soon but glad to know that you were able to have your second chemotherapy, so you now have two behind you.
The trouble with all these different names for drugs is that it makes it very confusing for patients. The generic drug should always be written without a capital letter and all the brand names making that generic drug are written with a capital letter. The generic drug to help boost white blood cell levels is filgrastim but there are different brand names and these can sometimes vary in North America and Europe. The brand names that I have seen most used on this forum are Neupogen and Neulasta, and now we have the brand name Zarzio, which is filgrastim made by Sandoz.
Apparently Neulasta is the brand name for pegfilgrastim and the difference between pegfilgrastim and filgrastim is that pegfilgrastim lasts much longer in the body than filgrastim. It lasts for 15 to 80 hours compared to 3 to 4 hours.
It would be interesting to know why one is given rather than the other. You say in your post that the filgrastim injections are also called Zarzio which would make one think that the injections you are having are the ones that last 3 to 4 hours.
I am putting a link so that everyone can read the explanation of what peg in front of filgrastim means. It is somewhat technical.
Do you think the pain this drug causes in the bone is because of boosting the white cells in the bone marrow? These are probably good questions to ask your team.
I always try to ask myself what I would do if faced with these questions. It is hard for me to answer because I did not have problems with any blood cell levels and filgrastim was never mentioned to me.
Since I am always reluctant to take drugs and feel that once you accept one drug you get into a never-ending chain of taking another to counteract the effects of the first drug, I see it all the time in friends and neighbours. There is a good chance I would have refused the drug. As I keep saying, we are all individuals and we have to make our own choices. I might have been hesitant knowing about neutropenia and the risk of perhaps having problems sever enough to need to be in hospital. I absolutely do not want to have to be in hospital, especially with all the terrible reports we are getting about the NHS. When I was going through treatment my biggest problem was having to spend five days in hospital following surgery and being away from home. I was fine with chemotherapy and radiotherapy because I knew I would not be staying at the hospital.
I do not know anything about Clarytin except that it is a brand name for an antihistamine.
Keep looking forward, drink plenty of fluids and get plenty of rest.
Fond thoughts.
Sylvia xxxx0 -
Thanks for that information, Sylvia, and Susan. I Took the first injection about five hours ago and it wasn't too bad. It was a very fine needle and went in easily and when you are in far enough it clicks and then retracts itself so you don't have to pull it out. It retracts back into the spring case for disposal. Have not had any noticeable ill effects, thank God.
The other news is I have now been called for a CT pulmonary angiogram on 18 Nov. Clearly, despite the negative chest X-ray and the CT scan, they still suspect pulmonary embolism (blood clots). I Think that might be the case as I appear to have most of the symptoms, including a persistent cough, breathlessness and some chest pain after eating. Am not worried as I know it can be an effect from chemo, and I know they can treat it with blood thinning drugs, but I am getting so tired of the endless tests, waiting around in Hospitals and the number of drugs I am having to take.
I woke up at 3.00 am last night and ended up coming downstairs as I wasn't able to get back to sleep. So I was exhausted as the day dragged on. At about 1.30 Pm managed to get a good 3 hours afternoon sleep so felt better. I am still feeling sleepy though so am off to bed soon, just watching question Time, which I enjoy. I still have some nausea and an acid feeling in my stomach but it improves if I eat no acidic food and drink.
Night, night, all.
Regards,
Anne x0 -
Hi, just catching up and feel I have to jump in about the white cell growth injections. The longer acting drug is really used to avoid having daily injections but for me personally I have found the side effects of the drug has been far worse than chemo. They have included bone pain, nausea, tiredness, weakness and a general yuck feeling. The standard course is 5 days or 1 neulasta injection but I usually get away with 3 days worth. I found clarytin helped somewhat but so far, Neuopgen is the nastiest drug I have ever encountered.0 -
Hello Anne
I was glad to know that so far you are feeling alright after doing your first injection with filgrastim. Keep us posted about how you feel in the days to come. I do admire you doing this injection. I do not know if I could do it.
I do hope everything will be fine on November 18th when you go for your CT pulmonary angiogram. It is best for the experts to err on the side of caution and make sure that everything is right for you. If you have to have blood thinning drugs do you think it will be aspirin?
I think we can all understand how you feel about the endless tests, waiting around in hospitals and taking drugs. This seems to be the cancer journey that we have to endure. I still remember how upset I was when I was diagnosed and I really felt that it must be someone else walking around in my body! You will get through this and get back to a normal life.
As far as sleep goes, just nod off to sleep any time that you feel the need.
I was glad to see that we share a common interest in Question Time. I have been watching it for a long time but have taken to watching it at 6pm on Sundays on the Parliament channel as I find if I watch it on Thursday evenings I drag through the day on Fridays. I always find that the non-politicians and the audience seem to have a lot more common sense than the politicians who tend to reiterate the party line and stick to a rehearsed script.
Do you watch This Week? I enjoy it but, again, watch it on Fridays at 6pm on the Parliament channel.
I also watch the Daily Politics if I am not too busy as well as the Sunday Politics. I think we all need to be informed about what is going on in our country and other countries.
Thinking of you and wishing you all the very best.
Sylvia xxxx0 -
Hello Michael
Welcome back to the thread. It is always useful to know how other people have fared on these white cell growth injections. Reading through some of the posts on the forum people's experiences seem to vary. Do you know whether Janette had these injections and if so how she fared?
I do hope you are not feeling too bad.
I have just been reading the November issue of the magazine What Doctors Don't Tell You. I buy it every month and find it really informative. I think this latest edition will be of great interest to everyone with cancer and also those who have not had it. This edition has obviously stirred it up a bit as it is all about cancer. The heading on the cover is “New light on cancer” and beneath it the headings are “The evidence on non-drug treatment. Essential survivor traits. The latest on ozone. Ways to prevent cancer”.
Apparently, a small group of people tried to prevent people reading this edition and this is all explained in the first three pages entitled “The inconvenient truth”.
I was particularly interested in the article about cancer patients who had experienced unexplained survival time and I thought the following headings were very important.
“The survivors' six steps to tackling cancer:
Embrace change. See cancer as a wake up call and be willing to discard old diets, habits and thoughts.
Find joy. Take time to do what you love, whether it is listening to music, gardening or walking the dog.
Be a difficult patient. Ask your doctor questions and make it clear you want to be fully involved in decisions.
Trust in the treatment. Once you have chosen a treatment that is right for you, put your faith in it.
Let go. Address stress and do not ignore the emotional aspects of your cancer.
Rise up and take the reins. See cancer as a challenge rather than a threat and focus on what you can do to make a difference.”
There are a lot more details in the particular article.
Best wishes.
Sylvia.0 -
Hello everyone
It has been quite a busy week on the thread for views but much quieter for posts. I do hope everyone is alright. We never know what a week will bring.
I do hope, Gill, that you are doing fine as you go through chemotherapy. Side effects and fatigue can build up as you go through it. I do hope your niece is coping with her non-hodgkins lymphoma.
Sandra (Big-leggy) how are you progressing with your chemotherapy?
Susan, what happened at your appointment with your oncologist on November 7th? I hope you had good news.
Adagio and InspiredbyDolce (Debra), how are you getting on over there in North America?
Linali (Lindsay), I hope all is well with you.
Carolben, I hope all is well with you too.
To my fellow Brits peterandliz, sam52 and Sam_UK, we are missing you on the thread.
To sam52 it will be four years on November 11th since I had the parathyroidectomy. It seems such a long time ago. You had yours not that long after so it must be approaching four years for you.
Hello to MartOne, another fellow Brit. I hope all is going well with your mother with her radiotherapy.
To Hero1967, I hope all is well with you and that you will let us know how you are getting on. I am not sure which country you come from.
It is a typical November day here in Exmouth with rain and cloud.
Best wishes to everyone.
Sylvia.0 -
I passed my sonogram and exam with flying colors. My new to me doctor thinks the bump is part of an old hematoma. After my surgery in January I had a hematoma the size of Texas, and after my last biopsy in September, another one the sized of Louisiana. Good on me he said for having found the lump. His best advice was to get to know my breast(s) because no one will know better. Maybe when hematoma #2 and the rads rash is gone! My poor boob is a wreck at the moment.
And in excellent news I got myself on the surgery schedule for port removal on December 5th. I project that the stitches can then come out on the 12th and this will mark the official end of my year with cancer, hopefully not to be repeated in the future. To be able to see that day on the calendar just a little more than a month away.....HAPPY!!!
Have a good weekend ladies.0 -
Hi Sylvia, Just to let you know that I have seen a doctor at the hospital. He doesn't think the lump is anything to worry about however I will be having an ultrasound on it in December when I see my breast surgeon who is still working part time, yippee!! I shall also be having a mammo and hopefully a MRI. The cancer didn't show on the mammo I had in 2011 but it showed up on the MRI so as you can imagine I am keen to continue having them.
I too live in the UK, thanks.xxx0 -
well my scan showed some progression of the nodules in my lungs again - not a huge amount, which is good, so that's good news. And there are new little ones that were just pinpricks before. Funny how our idea of good news changes - I'm just happy with small progression, so I stay symptom free as long as possible!
So I start on Xeloda on the 20th - having it in tablet form saves me a lot of travelling, will only have to see my onc once every 3 weeks. I'm a bit nervous, starting a new chemo, but I know it's do-able, and hopefully it'll knock the stuffing out of those nodules.
Had an MRI of my spine too, which shows no bone mets (whew and yay!) but I do have degeneration of the bones at L4 & L5 and also in the upper part of my spine. This is narrowing the channels where the nerves run. However, there is nothing I need do about that now, guess it's just if it keeps giving me problems I'll have to see an orthopaedic doc.
Despite that, my onc gave me the green light to go skydiving! It'll be a tandem dive - my friends all collected to pay for it - which is awesome!! I'm so excited and hope to do that next week maybe!! Another item to cross off the bucket list!
Susan, what was the result from your ultrasound on that lump? Holding thumbs and everything it's not bad news! Thinking of you~0 -
hi Carolben! I cannot cannot cannot believe you are going skydiving! AHHHMAZING! What guts you have! I would not be doing this with a gun to my head, but that said I have a friend who tried it 3 years ago and now lives for it! Good for you.
My ultrasound was ok and the onc thinks it is a bit of hematoma still resolving from January. My january surgical hematoma was gigantic. There are lots of films and pictures and diagnostics, some from September that he used to compare and contrast and in the end he thinks it is something that has been there but is getting smaller, unlike how cancer would behave. Here's hoping. All else is well here, port removal is scheduled so the end is in sight. I have my fingers and toes crossed for your new chemo. xoxo0 -
Hi Sylvia
Janette didn't need to receive injections to boost her white cells, but she did need to receive transfusions two or three times.
Reading the six steps was interesting and in that context I have another 10 minute podcast for you to listen to. It is http://www.rte.ie/radio1/podcast/podcast_mooney.xml
Scroll down and look for Kate Colemans cancer battle.
Hope the weather improves for you. We have had beautiful sunny weather all week but it has been cold however it is changing to at and warm tonight.
Michael0 -
Hello Susan
I was glad to know that you passed your sonogram and exam with flying colours. We all want good news for everyone. I do hope the haematoma and the rash will disappear soon.
It looks as though with those two dates on December 5th and 12th everything will be good for you and you will be able to have a good Christmas and start to put this cancer journey behind you.
Fond thoughts.
Sylvia xxxx0 -
Hello Hero1967
Thank you for getting in touch and letting us know how you are getting on. It is good to know that your doctor does not think that the lump is anything to worry about, but it is good that you will have an ultrasound in December when you see your breast surgeon. Be sure to let us know how you get on with your mammogram and the MRI scan if you have one.
I was glad to know that you live in the UK, as I am always pleased to hear from my fellow Brits. I started this thread originally because I thought in the UK there was not enough information and support for those of us with TNBC. Things have progressed a lot since then. I heard on the radio this morning that a PET/CT scan now seems to be current in cancer treatment.
Wishing you all the very best and hoping you will keep in touch.
Sylvia xxxx0 -
Hello Carolben
It was lovely to hear from you. I was sorry to learn that the scan showed some progression of the nodules in your lungs again, but it is good that it is not a huge amount. I am so happy for you. Let us hope that the Xeloda will do the trick and get rid of everything.
It must be a relief to be able to take the Xeloda in tablet form so that you do not have to travel so much to the hospital. I can understand why you would be a bit nervous as you start a new chemotherapy drug especially as you will be taking it at home and not in a hospital setting. Has your oncologist discussed possible side effects with this drug. I think it probably has most of the same side effects as most of the chemotherapy drugs. I trust they will have given you an oncology 24 hour phone number to contact is necessary.
It is good news that you have no bone mets, but some degeneration of the bones. Does this mean that you have osteoporosis? If so, it was probably caused by chemotherapy and even radiotherapy.
I was amazed to read that you are going skydiving. That takes some doing!! It is not something I could do. Please let us know how you get on with it. I get shivers just watching the people kite surfing on the Exmouth seafront. They go so far out.
Take care of yourself and keep in touch. Are you doing plenty of reading? Please read the magazine What Doctors Don't Tell You. It has so much useful information.
Fond thoughts.
Sylvia xxxx0 -
Hello Michael
Lovely to hear from you and thank you for the information about Janette. I was sorry to know that she had to have those transfusions. I suppose that was for low red blood cells.
Thank you for the link. I shall listen to the podcast this evening. I have a busy day today but I find I can relax in the evening when all chores and commitments are out of the way.
The sun is trying to appear but it does not look too hopeful. The window cleaner is due here this week and it usually rains as soon as he has finished cleaning the windows!
Keep well and keep in touch.
Sylvia.0 -
hi Sylvia and everyone
I seem to have never ending appointments at the moment and in between them trying to fit as much photography work in as I can but I had chemo #4 tax #1 last Wednesday
Thursday and Friday were fine and I thought I was getting off lightly were side affects were concerned but Saturday morning I could barely get out of bed...dizziness,weakness,body aches and stabbing pains, still got them now just not quite as bad as sat and sun...painkillers didn't touch it and a temp of 38.3....
Tax hit me much harder than I thought it would....but at least there's no nausea which is a big plus, decided earlier to nip out and get a few bits from tesco as we were running out of things which turned out to be a bad idea, I ended up sitting in the opticians while my friend finished the shopping, I don't mean to scare anyone when it comes to tax as everyone has different side affects, other girls are handling it better this is just personal to me...
My Neice had her half way scan which thankfully was clear so they are going to continue with chemo and start collecting healthy stem cells as soon as possible and store them to return later, it's not going to be a pleasant time for her but they are still talking about getting rid of it once and for all rather than just symptom control if the scan had showed further spread so that's good news
Susan I'm so glad your lump turned out to be nothing to worry about it must be a relief, one of my concerns when all this is over is that I go through life fretting over every lump, itch, rash pain etc and never fully enjoy my health again....did anyone else have or has these fears I'm really trying to be positive but it's hard
Thinking of everyone currently going through treatment...you can do this....what felt like a never ending journey at the start for me I now have 37 days till my last chemo...it really has gone that fast and I'm sure it will for you too
Take care
Gill0 -
Hello Jackpot (Gill)
Thank you for your post. It is true that going through chemotherapy is a very busy time and you do not seem to have a moment to yourself. It is good that you have some photography work in addition because it will help to keep your mind off all the hassle that chemotherapy brings. With four sessions behind you you are a good way there. Keep looking forward and taking care of yourself. It will soon be at an end.
The first week after chemotherapy is the most challenging and the most likely time to feel really below par, so take it really easy during that first week and try not to do too much. You need to keep on with plenty of water or other fluids and to get plenty of rest and sleep. Spoil yourself and relax.
Be vigilant about your temperature and if I were you if I had the slightest bit above normal, which I think is between 36 and 37, I would get in touch with your breast care nurse or phone the oncology department for which you should have been given a 24/7 number. That was the procedure that I was told to follow. You cannot be too careful, especially with any indication of a possible infection.
As far as the docetaxel (Taxotere) is concerned, just remember that it is said to be one of the best treatments for TNBC, along with paclitaxel (Taxol). They really belong to what I think is termed the second generation of chemotherapy drugs and have not been around as long as the older ones such as the FEC that you had. Keep an eye on your feet and hands, as the Taxotere can affect these. I have peripheral neuropathy in the feet as a result of Taxotere and have been told that it will never go away. Many women also find this drug causes discolouring of the nails, for me it was just toenails, and they can fall out. The daughter of one of my friends, who was diagnosed the same year as I was, still has problems with her toenails. At the time of treatment some of hers fell off, which never happened to me, and last week my friend told me that this daughter, who is very physically active and runs marathons, finds that her toenails still fall off when she is running. I found that unbelievable.
I can full appreciate what happened to you when you went shopping in Tescos. You do have to be careful as you can tire quite suddenly. I shall never forget passing out standing in WH Smiths in Exeter a few days after my first chemotherapy. One minute I was standing waiting near the exit while my husband queued to get some water and the next minute I was at the top of the lift lying on
the floor. My husband and a couple got me there, but I must have been completely out of it because I remembered nothing.
This week the friend who is going through chemotherapy for mets passed out in the town and had to be brought home. That was five days after a chemotherapy session. It shows how careful you have to be.
Thank you for the news about your niece and I was so glad to know that she had good news about the scan and that she was able to continue with chemotherapy. I do hope the experts are successful in getting rid of this lymphoma once and for all. It is amazing what they can do with stem cells.
You will find that as time goes on the thought of cancer will start to occupy a much smaller corner of your thoughts and life will become much more normal. The cancer journey is the worst time of all because it takes up all your days. Once you are through chemotherapy and start the radiotherapy, time will go more quickly. You will get through your radiotherapy and your treatment will be over. You will settle into a routine of check ups. Most days will seem normal and then there will be the nervousness just before check ups.
Keep focusing on those 37 days that will bring about your last chemotherapy.
Fond thoughts.
Sylvia xxxx0 -
Hello Michael
I am popping in to say that I have not yet had the time to listen to the link. There have been a lot of disruptions in the last two days. It is now downloaded and I hope to listen to is today.
The sun is shining here today and it makes all the difference.
Wishing you all the best.
Sylvia.0 -
Hello everyone
I just wanted to say that I hope those of you who have finished treatment and may just be viewing, will also try to post to support those going through treatment, as you know how important words of support are.
I am sure we can all sympathise with Jackpot (Gill), apandy (Anne), and Bigleggy (Sandra) as they go through the long ordeal of chemotherapy.
We can all sympathise with susaninicking as she goes through the daily treatment of radiotherapy. It is wearing having treatment each day, even though the treatment itself is of such short duration.
I am sure we all appreciate the courage of Carolben as she goes through treatment for mets and starts oral chemotherapy with Xeloda on November 20th.
We also need to think about Hero1967 who is waiting for an ultrasound in December for a lump. We all know what waiting for results is like.
Special hellos to adagio in Canada, InspiredbyDolce (Debra) in the USA, and linali (Lindsay) in Ireland. I hope you are well and enjoying life.
Thinking of you all and wishing you all well.
Sylvia.0
