Calling all triple negative breast cancer patients in the UK
Comments
-
Hello to everybody posting in our group and to all those viewing.
I am posting to wish you a Happy Springtime and a Happy Easter.
Whatever days you have off, if any, make the best of them and enjoy them. I saw on diary that Good Friday and Easter Monday are not public holidays in the US. Post and tell us what you do that is special on these days that is special, if anything.
Here in the UK we are awash with hot cross buns and Easter eggs.
Love.
Sylvia xxxx
0 -
Sylvia,
The link I copied from the other thread is from TNBC Foundation, it covers all the treatments now given for TNBC. I am amazed at all the drugs that were not even around when I had chemo 4 years ago. None of them are without side effects, of course.
The Foundation One site I also found puzzling, what I did find seemed very simplistic, I didn't see much that was new.
Mary
0 -
Hi Everyone
I hope you are all well.
I want to ask whoever has had Taxol - Mum has had her second infusion now and has the most unbearable bone pain everywhere, I would wake up and hear her shouting in pain its awful! She feels the EC drug was significantly easier on her than the taxol. Does this pain continue each time she has an infusion ? She had the same side effect last week also when she had her first infusion. I email her onco who said it looks like she will most likely have to lower her dosage again ( like they did with the EC ).
xx
0 -
Hi, Lou
Sorry it took me so long to get back, I had a very disjointed week, couldn't seem to focus on anything, had many things going on and couldn't concentrate. I can't believe it's been 3 months since you were here.
It sounds like you have been very busy. Being busy and feeling useful is a wonderful thing for taking your mind off unpleasantness, I do hope you like your new job. Have you been feeling back to normal and like your old self? The trip to Australia sounds wonderful, I think I will be going there in a year or two, if all things go as planned.
Your little boy looks like he has grown a lot in the last few months, time goes by so fast.
I'm glad you found a way to deal with the skin itches, olive oil and coconut oil do have a lot of uses! I use them too, and jojoba oil.
Keep it up, Lou, sounds like you are doing great!
Talk to you again soon, love, Mary
0 -
Slowly the forsythia is putting on flowers
0 -
Hi LoveandLight
I did not have Taxol, but did have Taxotere. I'm sure someone here had Taxol and can comment. I have read on other threads about leg pain being a side effect of one of the chemo drugs. Does your mom get the Neupogen injections after infusions? That is also a cause of leg pain sometimes. It is given to keep the white blood cells from getting too low for too long.
I'm sorry she is having such pain, and hope it gets better when they reduce the dose. I did find that all the chemo drugs had different side effects that came with them, and can vary among different people.
I hope things get better! And I hope you are well, and having a good Easter weekend.
Love, Mary
0 -
Sylvia,
Hot cross buns and Easter eggs sound good. Here is the same as far as the Easter eggs go. I was talking to a young mother the other day and I said this must be a really confusing time for young children. We have Jesus Christ rising from the grave, we have a large bunny that comes and brings all sorts of candy, and we run around looking for painted chicken eggs that adults have hidden in various places. And top it off with going to church service and then having a large meal. Funny when you think about it!
I hope you are having a good weekend, thanks for the pics, and the hopeful "Happy Spring"! We are supposed to have temps down to 27F tonight, 2 C for you. Brrr, the eggs might be frozen!
Talk later, Mary
0 -
Hello Mary,
I am so sorry that I confused the two different links when I posted back to you. I do know about the TNBC Foundation and, like you, I am amazed at all the drugs that are now available. It could be that they were around much earlier, but being used for metastatic cancer only and not much publicised. All those drugs concern me because, as you say, they all have side effects and nasty ones at that.
I do have doubts about keep adding different drugs for breast cancer in addition to those already being used. I liked it when I read the thread Success Stories and read about all the women who had had breast cancer way back when, and had only had surgery. My friend here in Exmouth had just surgery and some radiotherapy at the same time and that was over thirty years ago when she was in her twenties.
I think patients are probably dying from the drugs rather than the disease itself. I have seen two of my friends here go that way as well.
I did not really understand the Foundation One site.
Love.
Sylvia xxxx
0 -
Hello Sarah,
I was so sorry to read that your mum is suffering from awful bone pain everywhere in her body. I certainly feel that EC is easier to deal with than the taxane drugs are. I do not know if there is much difference between the two, docetaxel (Taxotere) and paclitaxel (Taxol). When I was going through treatment I got the impression that Taxotere was routinely being used here and Taxol in North America. It was something to do with the species of pine tree in North America and Europe. I think Taxol is more widely used here now.
Back in 2006 I asked my oncologist why she was giving me Taxotere rather than Taxol and she told me it was because Taxotere was less harmful on the heart. At that time patients were given an ECG before and after treatment.
Chemotherapy drugs do damage the bones and cause osteopenia or osteoporosis and I am always telling patients to get a bone density scan (DEXA scan) before and after treatment. This is a simple process and not to be confused with bone nuclide scan.
I had Taxotere every three weeks and did not experience any bone pain, even though, at that time, there was no Neupogen to be taken after each chemotherapy session to avoid low white blood cells.
Has your mother been given Neupogen or Neulasta to prevent low white blood cells and could this be causing the pain? The generic name is filgrastim and the brand name is Neupogen. Pegfilgrastim is the generic name for Neulasta. Bone pain is a very common adverse effect of Neupogen and Neulasta and can be controlled through pain killers. This is what happens with drugs, with having to take drugs to counteract the side effects of drugs. It is a vicious circle.
I do hope the amount of Taxol she is taking for low dose weekly treatment has been made up by using her height and weight. This was how my doses were made up. You need to know whether she is getting the correct dose.
Obviously your mother will not be able to continue with such bone pain, so it would seem, if all else fails, then she will have to have a lower dose to make it bearable or else come off the Taxol.
The most common side effect of filgrastim (Neupogen) is bone pain and my information is this pain is probably linked to the stimulant effect of the drug on bone marrow.
I hope this helps, Sarah, and it looks as though the bone pain your mother has is common with the two mentioned drugs. As for Taxol on its own and bone pain, I do not know.
We are not doctors here and this is something you need to sort out with your mother's medical team.
I do hope everything will sort itself out.
Enjoy Sunday and Monday.
Love.
Sylvia xxxx
0 -
Hello Mary,
I really enjoyed the photograph of your forsythia. It is much more advanced than the one in the grounds where I live. Spring is very behind here in Exmouth.
It is a cold Bank Holiday Easter weekend and there is snow forecast for tomorrow. It is a very quiet day here as all the shops are shut because of Easter Sunday. For me it will be a quiet day of catching up on various things and trying to rest and relax. The past six months have been very stressful with that flu jab, the lymphoedema and the problem mole. I have been messed around with appointments and have had just one lymphoedema appointment and the next one not possible until mid May. I still have no result from the deeper incision and it is taking a long time to heal. To say that I am fed up with it is an understatement!
I have just received another email from Chris Woollams but I have not looked at it yet.
Thinking of you.
Love.
Sylvia xxxx
0 -
Hello Everyone,
I'll plan to do a proper check in when I have more time. I exhausted myself by hosting Easter brunch. We also saw friends the night before, so the entire weekend was non-stop. The brunch turned out well, but I'm back to work tired.
Last week I went to the dentist twice, and the oncologist once, so my nerves were completely shot. The dentist wasn't as bad as I feared, but I won't be done with that project for a while. My tumor markers were fine, but my oncologist wants my surgeon to evaluate bumps along my incision that we hope are scar tissue. He also wants me to get a non-contrast, baseline CT scan. So there is no resolution there either. I do like my surgeon, though, and I think it will be good to get a second opinion. I notice that a lot of patients are followed up by both doctors.
I know the question came up about Taxol and cognitive side effects. I struggled with chemo fog quite a bit initially - so much so that I started to play electronic brain games to improve things. I'm not sure if the games helped, or if it just takes time, but the fog has mostly lifted. I'm glad that I did the Taxol/Carbo regimen. It seems to have worked well for me.
Take care, and have a good week,
Pam
0 -
Hello Pam,
It was nice to hear from you. It sounds as though you had a hectic Easter time and I do hope you will soon recover.
I can sympathise with you for having to go twice to the dentist in addition to a visit to the oncologist.
I was glad to know that your tumour markers were fine and I do hope you will find out quickly what the bumps are along your incision. Let us hope that it just scar tissue.
I am not sure what a non-contrast baseline CT scan is. I agree with you that a second opinion may be a good idea. I suppose that this CT scan will expose you to radiation just like an ordinary CT scan and I think we all want to avoid that exposure. Let us know how you get on.
I do remember, when I was going through treatment, and after treatment, that lots of women seemed to be talking about 'chemo brain'. I am not surprised at this, as chemotherapy is toxic and knocks the stuffing out of people.
It is interesting, rereading your details, to see that you had carboplatin (Paraplatin) and paclitaxel (Taxol) before AC. I wonder why it was decided to do it in that order?
I think we all need to question every aspect of the treatment being offered and the newly diagnosed, with all the information they now have, should be especially vigilant and get the best treatment with the fewest side effects.
I wonder about all these mammograms. Why cannot patients just have ultrasounds?
I also think we need to avoid node removal if we can. I thought there was supposed to be something called 'sentinel blue dye test', which will show up affected nodes. We could then have just the nodes affected, if any, and none of those not affected. This will help to avoid lymphoedema, although not guarantee that we shall not get it as just surgery and then chemotherapy and radiotherapy can cause it.
It seems to me that everything should be a bit more flexible.
The Easter Bank Holiday is over here but the schools etc. are on holiday for two weeks. There are too many people milling around in Exmouth!
I was in my natural food store this morning and I got talking to a very nice young man behind me in the queue. It turned out he was a teacher at one of the language schools here, teaching English as a second language, and was taking a party of Spanish students off to have a Devon Cream Tea (scones, with butter, then jam, and then Devon clotted cream) – mega calories!!
That is all for now. Take care and do not overdo things.
Love.
Sylvia xxxx
0 -
Hello everyone,
I have been noticing a lot of mention about dark chocolate and how healthy it is for you. This is the best one that I have found and it is 100% cocoa.
I am posting a picture of it.
Best wishes
Sylvia xxxx
0 -
Hi Sylvia, Mary and all
It's been one week since my last chemo and I feel better. In fact, this last chemo was harsh on me and I got the severest bone pain in my life. May be it was because of neopogen shots. I 've had 3 of them but don't want to have anymore.
Mary, I'm happy that the hammer did not fall on your head. Please take care of yourself more.
Sylvia, I can remember how kindly you invited me to this threat and stayed with me in my darkest days. You, Mary and all here are nice friends to me. I never like to miss you.
I should try to regain my strength back these days.
Love
Hanieh
0 -
Hello Hanieh,
It is always nice to hear from you.
I was sorry to read that your last chemotherapy treatment was harsh on you, but I was glad to read that a week later you are feeling better. With chemotherapy there is a build up of side effects as you go through each treatment. Now that you are a week away from the last one you should start to feel better and better. Was that the end of chemotherapy for you?
As for the Neupogen everything that I read about it says that it does cause bone pain. I think it must somehow affect the bone marrow. The only way to look at this in a positive way is to remember that the Neupogen is given to prevent white blood cells getting too low and causing neutropenia which can result in a patient having to go into hospital.
In Sarah's last post, she said that her mother had been crying out in pain in the bone after her second Taxol treatment. She did not mention whether her mother had been given Neupogen. She was asking if anyone had had bone pain after Taxol. I was browsing through other threads and noticed that someone on the TNs had posted to say that she had been having horrible bone pain for weeks after Taxol. As I do not know whether that person had also had Neupogen, I do not know whether she had experienced the bone pain from Taxol on its own.
I just tend to think that the taxane drugs, whether it is Taxol or Taxotere, have really nasty side effects.
I can understand that you do not want any more Neupogen. Reading my medical book with reference to Neupogen and bone pain, it just says take pain killers to relieve the pain. This is what worries me about some aspects of orthodox medicine. You start off with one drug and then you have the domino effect of being given drugs to counteract the effect of the other drug and so on! I am not going to submit myself to that kind of treatment.
Let us know what your plans are as you look to the future.
I thought you would like to know that I recently read in the April issue of the magazine What Doctors Don't Tell You, in an article on the BRCA1 and BRCA2 faulty genes, that only 5% of people are affected.
Thinking of you. Give yourself time to get your strength back.
Love.
Sylvia xxxx
0 -
Hello Mary and everyone,
I was reading through some threads and felt very concerned about the number of people suffering from the side effects of radiotherapy. When going through standard breast cancer treatment, chemotherapy seems to be the part of it that we dread the most. It is long and often very challenging and when it come to radiotherapy people seem to find it much easier and less of a worry and yet the more I read the more I realise how nasty the side effects can be.
Recently I read about someone who had a misalignment of the shoulder on the treatment side of her breast cancer and, apparently, this side effect is quite common. I also read about neck and shoulder pain as a result of holding your arms above your head day after day for the duration of the radiotherapy treatment.
My friend here who had breast cancer over thirty years ago has shoulder problems to this day from the radiotherapy treatment.
My own oncologist warned me about possible inflammation of the lungs from radiotherapy treatment.
There is always the problem of burns on the skin.
I have also read that radiotherapy can be a cause of lymphoedema.
It seems that the side effects of surgery, chemotherapy and radiotherapy are unrelenting, but it is the price we pay to stay alive.
I feel strongly that the newly diagnosed should be made aware of all these side effects and that they should fight their corner and make sure everything is done for them to avoid all this and that the side effects are minimised.
I do hope you have all recovered from the Easter break and are having a good week.
Best wishes.
Sylvia xxxx
0 -
Hello everyone,
I was looking up something in my Philip's Encyclopedia and just happened to see this diagram, which I thought was interesting, simple to understand and a good explanation.
It was under the heading Cancer and stated it is a group of diseases featuring the uncontrolled proliferation of cells (tumour formation).
Known causative agents:-
Smoking
Certain industrial chemicals
Asbestos dust
Radioactivity
Viruses
A genetic tendency
Early diagnosis holds out the best chance of successful treatment.
Best wishes
Sylvia
0 -
Hello adagio and Lou,
I was thinking of you today because some kind of rash just appeared on my left arm (the good arm) recently, for no apparent reason that I can think of. It is little red blotches and there is no itch or pain.
I showed it to the nurse at my surgery when I went to see her about the mole business last Wednesday. She said it was bites and to put some E45 cream on it. I was not convinced but did it anyway – no result!
I am thinking it is stress-related or an allergy and am just leaving it alone. It is not on my right arm where I have the lymphoedema and where I have had two incisions to remove a mole and that deep second incision is taking a long time to heal.
I have been very frustrated with all of this and very little attention from the the overwhelmed, 'collapsing' NHS.
Do you have any thoughts?
Love.
Sylvia xxxx
0 -
Dear Sylvia,
I am sorry to hear that you are facing another concern. Sometimes, it is just so frustrating when it comes one after another. Especially when we are trying to avoid as much medications as we can because our body went through so much already.
I am not sure if it was the same as my hives attack. My hives was very itchy and I couldn't sleep at all that time. The oral medicine and the cream prescribed for me didn't help much at that time. That is why,I accidentally tried to relieve it by olive oil. I never thought that it will work wonders because aside from easing the pain another skin problem I was experiencing was relieved as well.
Right after I finished treatment I experience a feeling like something is crawling all over my body and it was more on the legs and arms. But after the relief I felt from olive oil I continue to apply it right after I shower everyday and I don't have the crawling sensation problem anymore.
Like you, I also hate taking medicines unless really necessary and so I am sticking to olive oil since I believe it is also beneficial
I hope you are able to find some relief soon.
I am thinking of you.
Best regards,
Lou
0 -
Dear Mary,
I just came back from work today and I am off from work tomorrow. I will answer your e-mail once I am free.
I am bringing my DS tomorrow at the beach to unwind. To enjoy the sky, the sun and the sand.
Best regards,
Lou
0 -
Hi Sylvia,
So sorry to hear about the rash on your arm - but happy for you that it is not itchy in any way. The skin is a mysterious organ and it can react to all manner of things under the sun including the sun itself. If only we could understand why we get these irritating rashes, hives, itch and pain? I have never heard of E45 cream, but just looked it up, and I see that it has paraffin and lanolin in it. I have read that lanolin can be allergenic and I am not certain as to what benefits light paraffin has on the skin. I have tried myriad creams, oils and potions. I do believe that our skin is symptomatic of something going on inside us at a deeper level - so your suggestion of stress sounds possible. Certain foods can make our skin react as I have discovered. I changed all of my laundry detergent and soaps because I read that our bodies do need change and that things we have not reacted to before can suddenly cause a reaction. I also avoid certain types of clothing to prevent irritation. Thankfully my skin has settled right down and occasionally I get a welt and intense itch. I would love to know why - but one thing I do know is that I will do all I can to help it and ease it. But I try to avoid anything with chemicals in it - and cortisone I will use as a desperate measure, but only for a short time.
I am saddened to hear that your right arm is taking a long time to heal - have you considered taking additional vitamin C to help speed up healing?
Take care, Sylvia
0 -
Hello Lou,
Thank you for your kind words. At the moment I am not putting anything on the rash on my left arm as I do not like any of the creams that the doctor or pharmacist have on hand. They seem to like E45 cream in various forms and aqueous cream. I do not like some of the ingredients. I am just going to keep an eye on things.
I have bought some witch hazel and old fashioned calamine lotion and I might experiment with these on a few spots at a time.
At the lymphoedema clinic they swear by just ordinary Vaseline and that seems to have helped with the wound from the mole business. It stops everything from crusting.
I am longing for some mild Spring days and doing some gardening, not to mention planting some Spring flowers.
Take care.
Love.
Sylvia xxxx
0 -
Hello adagio,
Thank you for your kind words. Like you, I am very careful with my skin and do not like most of the products that come from the GP surgery or the pharmacy.
I am convinced this rash has come from stress and anxiety. The NHS is not really functioning properly.
I am very careful with laundry products and use only Surcare washing liquid in the washing machine. It is unperfumed, for sensitive skins and non-bio. I use a soap called Simple that is also unperfumed and for sensitive skins.
I cannot think of anything out of my ordinary everyday nutrition that would have caused this, but one never knows.
As for clothing, I agree with you and I am wary of a lot of the clothing on sale. Everything is pretty awful with textiles now and the lovely clothes that used to be made here are no longer made and the clothing from the third world is awful. Women here look very scruffy and they are all dressed the same.
Thank you for taking the time to post.
I am taking vitamin C and I have been taking zinc while I have been going through these two surgeries. I was told that it will take a year for the muscle etc. of the right arm to become normal again.
Love.
Sylvia xxxx
0 -
Hi Sylvia
Sorry to hear about your rash. I wanted to respond to you earlier and mention the stress that you've had recently, but then I saw you mentioned it yourself. I'm too young to give you any advice, but I think you need to be less concerned about health issues. After this diagnosis, every pain or symptom scares us to the point we immediately think of the worst. But as you have been healthy throughout all these years and breast cancer seems to be the only serious health issue you have dealt with, you can have more peace of mind and stay more positive. Im sure you will have many healthy years ahead as you are living a healthy life and trying to give hope and support to people from different parts of the world.
Right now I'm trying to return to my daily routine, yet at times my feelings and emotions do not tend to follow what I desire. Insomnia is what bothers me the most. I even do not like my bedroom anymore as it does not give me a sense of calm. In fact, during my chemo, I used to sleep on the sofa in the hall as I could sleep better there. My husband just slept near me on the floor on a mattress. I was sorry for that but I couldn't help it. Now even that sofa, doesn't help me sleep. Sometimes, I watch the clock until 3 am. I can not even read books which has always been my greatest hobby. I would like to think that this could also be one of the side effects of my chemo and as time goes on I will be better.
It's one week since my last chemo, but I roll call my fuzz of white hair whenever I see myself in a mirror. Everyone tells me not to worry and it will grow back quickly but no one can understand how difficult it is to see yourself completely bald twice in yourlife and try to stay calm and positive even though the future is compelety uncertain. The worst point is wearing wig under scarf and teaching for long hours. Sometimes, I wish I had been born anywhere else in the world but not here to have to conform to the imposed hijab. But then again, I remember there are still alot of depressed and dissatisfied people even in the most liberal parts of the world. We should be in complete charge of our own lives and let the politicians be busy with their dirty politics. Now a days, many girls and women take off their scarves in public places to show their protest. I used to do so while driving but this disease took all my energies and even my thoughts. I may get my real self back as I see myself look normal in the mirrors. Also, I'm planning to go to the gym as I think I have gained weight during my treatment.
About radiation, I m really in doubt. My doctor is certain that I need it as my tumor was big but I'm scared of having it for the second time. I can't decide what to do. I will see my doctor in 2 weeks and I will discuss it more with him. I hope he gains my trust back in doctors.
Hope everything goes well with me and all here.
Love
Hanieh
0 -
Hi, Sylvia
I'm sorry you are now beset with a rash along with everything else. Maybe a little sunshine would be good for it, but sunshine is in short supply these days. We are having a beautiful dayhere for once, BUT tomorrow afternoon begins another snow, possibly 3 inches more or less. This week we have had every temp from below freezing up to 65F today, 18C to you.
Getting at the root of what is actually causing a rash seems to be outside the knowledge of docs, even the dermatologist we would see when my husband had rashes just called it eczema, and gave him all kinds of creams that didn't work. I finally got him a UV lamp, that cleared things up quickly. And sunshine would fix it as well.
A few days ago I woke up with two bumps on my leg that looked like a snakebite, but obviously wasn't, and also with a big bleeding sore on the inside of my mouth. That I am pinning on the periodontist, they have gone to a new method of cleaning teeth. They use a very strong salt solution and power-wash the teeth, I had salt deposit all over my face afterwards, and I think it caused the sore in my mouth because it wasn't there when they examined me.
I saw the pic of your chocolate bar, 100% must be very good for you, I haven't seen that here. I have a bar of 72% chocolate, and it's good, but does have some sugar. I will watch out for a 100% chocolate bar.
As you may remember, I did not have radiation. I don't know whether to feel good or bad about that, so I don't think about it. I did tell the docs I had a lot of arm and shoulder pain already, and they didn't order it. At the time I was very glad of that. I'm sure it does have side effects, and you're right, all of the treatment routine does. I have constant nervy pain in my mastectomy site, usually worse with more activity. But now that there are so many other places on my body that are painful it seems minor to me. I do believe that the radiation techs are very accurate at honing in on the exact area they want to radiate, but lung and heart damage are always a rare possibility.
I did look at Chris Woollams' post, it is not too long, but some of the articles are long. He talks of the immune system and has a review of the ketogenic diet, also he talks about the possible cause of Rheumatoid Arthritis (hint: the gut!), and also thinks the large number of Caesarean-section births may be causing the children born more likely to be overweight.
I like scones a lot, but what exactly is clotted cream from Devon? It always has sounded odd to me, like cream that has curdled. Can you explain?
I will talk to you again soon, I hope you have some sunshine while we are working through our snow!
Love, Mary
0 -
Hi, Hanieh
It's funny, I was just starting to write you when you sent a message, glad you are feeling like posting. Thanks for chiding me about the hammer, I do get in too much of a hurry sometimes and tend to be a little clumsy anyway.
I am so sorry about your insomnia. I understand very well, because I have not slept well for most of my life. I have to have no distractions, and have the room very dark, cool and quiet or it is a lost cause. I cannot sleep well on planes or in cars, so that is hard too. I hope your insomnia will pass as you get farther away from the effects of the chemo, and it probably will do so.
I hope you have a good talk with your doc about the radiation, it might be a shorter routine than the first time, but I don't know. And your lovely hair will grow, but it will probably go through some changes before it's back to normal. If you are wearing the hijab, do you need the wig under it? I'm sure that's uncomfortable.
I am so sorry about all the worries you have at your young age, you have a very good attitude and a strong mind. This will help you through these hard times, also you have such a loving family. How sweet that your husband would sleep on the floor next to you!
I will talk to you soon, and I will try not to trip over my shoelaces!
Love, Mary
0 -
Dear Mary,
I still have that “chemo brain” effect. I cannot multitask as much as I want to. Sometimes I feel like my thoughts are slower. But at least for now I am able to articulate a little bit faster than before. Last time it’s like after having a conversation or writing something only I realised that I should have answered or written this way. It’s like I only thought about things after it happens. I still struggle to find words sometimes when I am in a conversation but I can see some improvements. Because even now I can write a little bit lengthy last time it was very short.
Yes, I tried to keep myself busy otherwise I over think things and it is not good for us. When I work I find that I sleep well and I only sleep well this days if I sleep with my DS or DH. I have trouble sleeping when I sleep alone. It is like I am having a nightmare. I wake up in between around 3 or 4 am and will not be able to fall back to sleep again.
We really enjoyed Australia. It was a good break. We hope to be back again. Maybe next time will be Perth or Sydney. Which part of Australia you are planning to visit?
In general, I feel good. My neuropathy in both fingers and feet have settled in. The numbness from my mastectomy side is gone as well. But my eye problem didn’t get better so now I am using a reading glass
Initially after finishing chemo I was juicing but now I am doing it occasionally only. When I juice, I combined carrots, beetroot, broccoli, celery, ginger, turmeric and either apple or orange. Alternatively I drink fresh coconut juice or chia seed soaked in water. At some point I drink green tea only but I went back to coffee because like you I also love coffee but no milk or sugar.
I eat chicken alternately with fish or garden fresh salad but very little serving. I eat a lot of vegie and fruits everyday.
Next month will be the 1st year of finishing my chemo, 4 May of to be exact.
He is growing up fast indeed and he talks a lot nowadays that at times I ask him to keep quiet already. When I am home he will follow me around and everything that comes out from his mouth is nothing but “Mommy!”
The olive oil really helps a lot for me and I feel comfortable using it.
Love the photo you posted. It is so inviting.
Best regards,
Lou
0 -
Hello Hanieh,
It was nice to hear from you.
I am not really concerned about my health issues but I do follow all the news about health in general and will continue to do so. Here in the UK I am concerned that the medical establishment seems to be intent on medicating the whole population, including children, and I sometimes think more harm than good is done.
I think the elderly population has to be especially vigilant as I see from around me that people are taking way too many pills, all with side effects, and thus more pills. That is not for me. Raymond and I are strictly 'no pills' people!
I am not worried about my health, but I am frustrated and want to make sure that I sort out my problems and will probably do that myself.
I did have another very serious health problem with hyperparathyroidism, diagnosed by my exceptional oncologist and breast cancer surgeon/endocrinologist, at the same time as my breast cancer. It had remained undiagnosed until they dealt with it and I had no symptoms of which I was aware.
I am determined to extricate myself from the lymphoedema and dermatology departments at the hospital.
I can understand your concerns at such a young age. I often wonder how I would have dealt with breast cancer when I was much younger.
I think it is good that you are trying to return to your daily routine and I understand how emotion can at times overwhelm you.
I was sorry to read that you are suffering from insomnia and I do not know what the solution is because I know that, when you go to bed, your mind seems to take over and a thousand thoughts can run through it. I find it takes me a long time to fall asleep.
As you know, I am a minimalist so there is very little in the bedroom. There is just the bed with fitted bedroom furniture, drawers either side of the bed and a fitted wardrobe on the main wall opposite. I have three wall art there of pale coloured flowers, and a pale blue quilt with matching pale blue opaque blinds that keep most of the light out. I do not have any clutter and keep clothes to a minimum. The fitted carpet is beige. All this makes for peace and calm.
I do hope you will be able to take up reading again soon. Perhaps you should start with some light reading.
You will have to be patient with your hair growing back. It will take some time. I remember that I had my first chemotherapy (EC) in November 2005 and when I had the second one in December my hair had already started to fall out and I was wearing a wig. I wore it all through 2006 and into 2007. I remember it was April 2007 and Raymond and I were going to Exeter and I went without my wig. I did not wear it again after that. I understand how awful it is for you as you are going through this a second time, but it will come to an end.
I do understand how difficult it must be to wear a wig under a scarf and to be teaching for long hours. I understand your feeling about the hijab. It is a control factor by men. Women in the UK have had to fight for different things over the centuries. There was one hell of a fight for women to get the vote and to be the equals of men. Right now there is a fight going on for women to be paid the same as men when they are doing the same work. It is quite a struggle and legislation has now been brought in to enforce it.
I do agree with you that we women should be in charge of our own lives.
I do hope you can get more information about the need for radiotherapy. Make sure you get several opinions about this. You do not have nodes affected so that is a plus.
You are a strong-minded young woman and you will get through this. We are your friends here and we shall do all we can to help. I am dedicated to this thread and want to be the champion for all of you and do not want to be frustrated with my own minor things. It has frustrated me to have these things happening to me because I want to be your motivation and inspiration to get through treatment, just like I did and get back to your normal lives.
Love.
Sylvia xxxx
0 -
Hello Mary,
It was nice to hear from you and I shall post later on today. I have just done two long posts and need a break. I just wanted to say that you should be able to track down that 100% Montezuma chocolate. It is the best I have found. There is also Lindt 90% that I have seen in supermarkets here, but it does not compare to the Montezuma one.
I shall talk later. You might want to look at the parathyroid and breast cancer thread in the IDC Inductal Carcinoma forum. I have just posted about gum disease and some cancers. I shall probably put it on our thread when I can find the time.
Love.
Sylvia xxxx
0 -
Hello Mary,
Thank you for your last post. I am just leaving the rash to disappear in its own time.
Have you noticed how many different words there are for a rash? We have dermatitis, urticaria, hives, psoriasis, eczema, allergic reaction, rash, nettle rash.
The products sold to relieve some of these are worse than the rash and, guess what, they can cause a rash!
I do not like the idea of that salt solution and power-wash on the teeth and I think I would refuse to have it. I am becoming as wary of dentists as I am of doctors. I do hope that the big bleeding sore on the inside of your mouth will disappear. I seem to have a sore mouth after visits to the dentist. I go twice a year to the dentist and twice to the hygienist. This seems to be the way treatment is going here. I find the hygienist does a better job, but I hate all the cold water that they use to rinse. The hygienist told me it was not good to have the teeth cleaned too often as it makes them more sensitive. The dentist seems to be more the dental surgeon and seems to be there to remove teeth.
The latest product here in toothpaste seems to be one with black charcoal in it. Have you used this? I was recently reading about gums in What Doctors Don't Tell You and after reading the one about gum disease I started looking into the products recommended. I knew about CoenzymeQ10 and knew about it long ago, but it is so expensive, would be an ongoing expense, and has often got other products in it. Apparently low levels of CoQ10, a vitamin-like compound found in practically every cell of the human body, have been found in as many as 96% of patients with periodontal disease. It seems that CoQ10 supplements can boost concentration of this in diseased gums and reduce inflammation. Applying it to the gums was just as effective as traditional scaling for reducing plaque and bleeding gums in a group of gingivitis sufferers. It seems that you need to use the supplements and the topical treatment.
The other products, such as Propolis, I am trying in the form of a mouthwash that can also be used as a drink, five drops in warm water. The other products, folate, vitamin C and green tea, I get in my diet anyway.
It is of concern to me that it is now being said that there is a proven link between gum disease and some cancers. Breast cancer is not one of those listed, at present. The article I have read says that bacteria in gum disease have also been found in colorectal cancer tissues. Finally it says that smokers are more likely to suffer from gum disease and smoking also raises the risk for lung and colorectal disease.
As for radiation, I think that if it can be avoided it is all for the better. There are too many long term side effects from the three standard procedures in breast cancer treatment and I think if a patient can survive with minimal treatment it is all for the good. I do not think the treatment will change until patients begin to question it all.
As for Devon clotted cream, it is not something that I like and I would not touch it these days. I am pasting a picture of clotted cream and a description of it (from Wikipedia).
"Clotted cream (sometimes called scalded, clouted, Devonshire or Cornish cream) is a thick cream made by indirectly heating full-cream cow's milk using steam or a water bath and then leaving it in shallow pans to cool slowly. During this time, the cream content rises to the surface and forms "clots" or "clouts".[1] It forms an essential part of a cream tea.
Although its origin is uncertain, the cream's production is commonly associated with dairy farms in southwest England and in particular the counties of Cornwall and Devon. The current largest commercial producer in the United Kingdom is Rodda's at Scorrier, Redruth, Cornwall, which can produce up to 25 tonnes (25,000 kg; 55,000 lbs.) of clotted cream a day.[2] In 1998 the term Cornish clotted cream became a Protected Designation of Origin (PDO) by European Union directive, as long as the milk is produced in Cornwall and the minimum fat content is 55%".
https://en.wikipedia.org/wiki/Clotted_cream
That is about all for today.
Love.
Sylvia xxxx
0
