Calling all triple negative breast cancer patients in the UK
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Hello everyone,
I hope you are all coping well. I am posting a few bits of information that I have picked up lately.
I read recently that the proton beam centre is now completed in Manchester. I do not know what is happening about the one that is being built in London. Remember that proton beam therapy is said to be less harmful than the current radiotherapy. To my fellow Brits, I would say, when faced with radiotherapy, ask about proton beam. We are too far behind the times with this treatment, which is available in other countries.
The latest information from the Lancet about nutrition is that we should cut down on red meat, only have one glass of milk every two weeks and two eggs every three weeks. Will the various tips on meat and dairy products ever end? Will the meat and dairy industry put up with it? I think there will probably be a backlash. My own personal opinion is that going meat and dairy free can only improve health, not to mention the environment, but that is my own opinion.
I have recently been reading a very interesting book entitled Snowball in a Blizzard – the tricky problem of uncertainty in medicine by Steven Hatch - "Like a conversation with a doctor you would trust with your life – Ray Tallis". You might be interested in what is said about mammography and how uncertain it is.
You might also be interested in two brands of vitamins that I have been looking into that do not have fillers. They are Terranova – synergistic nutrition, and the other supplements are Viridian.
If you have any snippets of information or anything that you have learned new about breast cancer treatment, please post to let us know. Although we discuss many things, the thread is first and foremost about breast cancer in all its aspects.
That is all for now. Have a good weekend. Here in Exmouth it is raining cats and dogs!!
Love.
Sylvia xxxx
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As for Brexit,
I had forgotten that Theresa May was a Remainer. I don't fully understand all that's going on with Brexit, however I watched a lot of last weeks meetings/news reports on Sky News (which I get live via a Roku player). I always considered people from the UK to be very reserved, however it was an eye-opener the first time I watched your politicians in their chambers. I don't understand how you can hear someone talk when others are talking and yelling in the background. Maybe they should use Twitter.
Do you want to switch with our politicians in the US? lol
Sylvia, I never heard of a proton beam. I'll do some research but is it supposed to be more effective than radiation?
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Well I've done a little research on proton beam. Doesn't seem like it's for all types of cancer but I'm certainly going to have my sister ask her radiologist about it.
The new cancer hospital she's going to has a Proton Therapy Center. The hospital was ranked in the top 10 in the U.S. for adult cancer care by U.S. News & World Report's 2018–2019 "Best Hospitals" surveys, and has been in the top 10 for the past for 13 consecutive years. I think she's in good hands and we're both feeling a lot less worrisome.
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Last week's Hospital on BBC2 had a three-year-old boy with a tumour on his brain stem who was sent to Germany for Proton Beam Therapy. It cost the NHS £130,000; that included travel and accommodation for the family but it's clearly very expensive and I'm guessing it'll be rationed to people who are, for some reason, unsuitable for normal photon radiotherapy for many years to come..
Susie
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Hi Mary,
Thank you for your comments on completing treatment. It will now be April or there abuts before I finish. MO wants me to do 8 rounds of Xeloda and I'm on two weeks on two weeks off. He could see I was disappointed and reminded me it was my call. Could not see why I would give up now, particularly as the SEs are minor.
As for coming to Australia yes it is a long - flight both ways. Best to break it up with decent layovers if you can. Make sure to plan it for a nice part of the year (depending upon where you intend to go). This summer has been incredibly hot so far with little relief in sight for country NSW (where we live).
Hope everyone has had a good start to 2019.
Best regards xxx0 -
Hi, Sylvia
I had a little time to look over my new WDDTY (What Doctors Don't Tell You) magazine, my style is usually to skim over the entirety, and then return and go over more slowly. I wanted to comment on an article titled "Too Much Medicine, Too Little Benefit", concerning overdiagnosis and misdiagnosis. I went back to it this morning and in the authors' opinion, there are 7 diseases/conditions that are most commonly overdiagnosed. One of these is DCIS (breast cancer in situ). In his words, "DCIS is an abnormality in the breast tissue that is often picked up by routine mammogram screening, and its' discovery will trigger the full force of cancer therapy--chemotherapy, radiotherapy, and even mastectomy."
He goes on, "But DCIS isn't cancer, and only in very rare cases does it develop into a tumor---yet women are forced through the pain and stress of cancer treatment. This is borne out by cancer statistics, showing that, despite this overtreatment, the actual number of women who suffer advanced, life-threatening BC hasn't changed in years."
There is more to the article, on this subject and on others. In his list of the most commonly overdiagnosed, 1. Thyroid Cancer 2. ADHD 3. Prostrate Cancer 4. PCOS-(Polycystic Ovary Syndrome) 5. Breast Cancer 6. Mild Hypertension 7. Prediabetes
If true, this would explain why there has been such a flurry of women I know who have been diagnosed with DCIS, just in the last 5 years. Most that I know have had lumpectomy or mastectomy, and then many have breast reconstruction, which is not an easy process. Is it possible they have been scared out of their wits and gone through all this for no good reason?
I would like to know stats for the number of young women who are diagnosed with invasive BC, we see so many on these threads. I wonder if that is a stable number, it seems like a lot of women to me, but perhaps that is only because I am hypersensitive to the subject.
There is much more in this issue, but I found this interesting and pertinent to BC. Talk to you soon.
Love, Mary
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Mary, what does he mean when he says, "But DCIS isn't cancer?" That's pretty strong statement. I wonder why so many doctors say it is!
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Hi viewfinder,
He does not really explain his statement in the article I quoted. I thought the same as you when I read it, then I poked around a little and found articles with differing opinions. This one following is pretty good, and explains it better.
http://stopcancerfund.org/p-breast-cancer/dcis-mos...
I have been wondering for a long time why there is such a big increase in women with BC that have had surgeries but often nothing else, except perhaps one of the hormone blockers. This does explain that, perhaps. More and better testing finding more things that weren't found before? I don't know, but I found the subject interesting. I do know a lady (now 85) who is 25 years past her BC diagnosis. She said she had something in her breast, a small spot, and the docs thought it would be okay to just watch it for some time. A couple of years later they decided to do surgery and she tried chemo, but was unable to finish it. She is great, still works at a job, and is an energetic lady.
Talk later, Mary
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I was diagnosed with DCIS in 2013 and told by my surgeon on numerous occasions that it is zero stage therefore not really cancer. When I queried this I was told it is not really cancer because it is in situ and hasn't breached the cell walls i.e. It is not invasive. Key point here that was not really stated. It is not invasive yet!!
That's all well and good but I still had two lumpectomies and 30 rounds of radiation to 'mop it up'.
Almost five years out, I found lump very close to the lumpectomy site that was diagnosed as TNBC. The doctors say it was a new occurance not a re-occurance. Hmm.
Post my first encounter I questioned. Are we over diagnosing BC because we can find tumours that in the past we may not have found? And are people overreacting to a DCIS diagnosis with mastectomy?
Well here I am with a double mastectomy and a left chest that has been irradiated twice, skin that is risky for reconstruction and an increased chance the cancer will metastasise.
Another interesting and controversial point is my doctors have said that DCIS is not diagnosed as + or -. So it is not as if I had hormone positive BC that has mutated to TNBC.
I find it all very interesting. I don't question my treatment but just hope someone somewhere is looking at the stats. I hear lots about women with DCIS who end up with Invasive BC down the track.
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Thank you helenlouise for your helpful response. Sorry you've had to go through all that you have.
According to an article at this site 'DCIS is called "non-invasive" because it hasn't spread beyond the milk duct into any normal surrounding breast tissue. DCIS isn't life-threatening, but having DCIS can increase the risk of developing an invasive breast cancer later on."
Mary, I think two of the reasons there is such a big increase in women with BC is because of better screening and people are living longer today. Personally, if I had DCIS when first diagnosed, I'd have it removed.
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HI Helenlouise
Yes, I think that's it, the meaning of the author of the first article quoted is "since it's not invasive it's not cancer." I do think the article I linked to explains it pretty well too. However, I don't think I would be comfortable either knowing there was something that might begin to grow in the ducts!
And then you say the new tumor you developed was not related, but a new occurrence. So it's just all rather confusing. I had a biopsy years ago that turned out to be a calcification (in other breast) which scared me to death, and then was told it was nothing. But does it mean one is more prone to developing a dangerous tumor? I had 2 aunts, one on father's side and one related by marriage, who both had DCIS, one had breast removed and one had lumpectomy, no chemo, no rads and lived long lives afterwards. One did die of pancreatic cancer at age 84, but docs said not related to BC. My DIL was diagnosed with DCIS about 2 years ago, she had both breasts removed and reconstruction but no chemo, no rads, and no hormone blockers. I think I personally know at least 6 women who, since I was diagnosed, have been treated for DCIS. They have had either mastectomy or lumpectomy, some had reconstructive surgery and some take the hormone blockers. A couple of them had rads. It sounds like they put you through a lot of radiation when you had the first breast lump, which apparently did not keep you from developing the TNBC tumor.
I don't really think I will find any concrete answers, my BC surgeon says we have BC of all kinds because we are women, and the odds are that a certain percent of us will have it.
I had not heard that DCIS is not - or +, that is interesting.
Talk later, Mary
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Hi viewfinder,
I hope you didn't misunderstand my beginning this conversation, I was not saying I thought DCIS was not something that could be dangerous. I have just always wondered why it seems so many people I know have been diagnosed with it, including DIL, and are going through so much because of it. And then I see an article that calls it "not cancer" and it moved me to comment.
Yes, the article I linked to says the same, DCIS is called "not cancer" because it is not invasive. In the opinion of the author of the first article it might never become invasive. Who wants to take that chance? I wouldn't, I would not be comfortable knowing it existed in my body. The question is, what if I never knew it was there? I wonder what the odds are that it would grow?
These are just questions I ask myself, because I am curious. I am also curious about why so many young women are turning up with TNBC, although when I was diagnosed I was told that usually it is younger women or Asian or black women who have TNBC.
And I'm very glad your sis has found herself in a very good hospital, that is great to have a feeling of confidence that your docs are making the best decisions for her.
Talk again soon, Mary
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Hi, Gill
I haven't seen you around lately, hope you are doing well.
I wanted to tell you I had a conversation with a man at a post-funeral luncheon last week, somehow the conversation went to health, then cancer, and I mentioned TNBC. It turned out this man's wife had not only a metaplastic TNBC tumor, but also and at the same time, a HER2+ tumor. She has finished her treatment and he says she is doing very well. She must be one tough cookie! On top of all that, she afterwards developed a thyroid tumor, she was told not related. She was not with him, but I was glad to hear she was doing well.
Just thought I would drop that in on you, I don't come across very many people with TNBC here locally, much less metaplastic.
Hope all is well in Norfolk, and you are keeping warm.
Mary
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HI, Susie
Very interesting about the boy being sent to Germany for the Proton Beam Therapy. I don't know a lot about it but it sounds like it would be good for tumors in the brain, where orthodox radiation would be dangerous. I'll bet it is expensive, and will continue to be so until it becomes more widely used. First has to be approved by whoever does all that at the NHS, I suppose. I looked it up over here and there are a lot of places that offer it, one only a couple of hours from me. It is offered at centers on East Coast throughout the Midwest, and then on the West Coast here. I didn't realize that, I am surprised UK has no centers that offer it?
Later, Mary
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Hello everyone,
I have been following your posts about DCIS in the main and mammograms to a lesser degree. I have a friend who is a nurse of many years and she told me that DCIS (ductal carcinoma in situ) is a pre-cancerous state that may or may not develop into invasive cancer. There is no point in trying to come up with a definite answer, since there are differing opinions. Some will say that you should just keep an eye on it and others you should treat it. If you treat I would think minimum treatment would be the answer. If you are diagnosed with it, it is up to you, the patient, what you want done. My nursing friend told me that a friend of her had DCIS and her breast cancer consultant surgeon did not want to treat it in any way, but did surgery at the patient's request.
As for mammograms, it is the same situation. There will be opposing views. I get the impression that mammograms are being overdone and that they are probably picking up things that will not cause problems. Remember, each time you have a mammogram you are exposed to radiation and radiation causes cancer. Again, it is up to the patient to decide whether they want mammograms or not.
As for proton beam therapy, it is said to be safer. It is more targeted. The standard radiotherapy treatment is ion beam radiotherapy. I did not quite understand what Susie meant by photon.
Mary, I was pleased to know you enjoyed What Doctors Don't Tell You. Again, it is up to the individual as in all things to decide what they believe and what they do not. At the moment I am waiting for the February edition.
There will always be lack of approval from orthodox medicine with anything of which they do not approve or that may threaten their positions.
In all things it should be the patient who decides what they want to do and they should not be intimidated by doctors.
Today in Exmouth it is rather dreary. I recently read that January 21st is supposed to be the worst day of the year and is known as blue Monday. I do not understand that. Does anyone have any ideas?
Best wishes to all of you.
Sylvia xxxx
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Sylvia
Today, January 21, is supposedly the most depressing day of the year, thus Blue Monday. Combination of after-holiday blues, cold weather and long dark nights. And arriving credit card bills. Someone supposedly came up with an equation and today is the day.
I wonder how this applies to tropical islands? Just another day, I would think. It is cold here with a biting wind.
I survived the 2 very cold funerals. My neighbor lady had been ill for a long time, my friend who died was much different. Her kids were with her on a normal Friday night, on Saturday morning they found her non-responsive, rushed her to the hospital where she died a week later, having never regained consciousness. The diagnosis was a sinus infection that turned into a bacterial infection that went to the spinal cord and brain, apparently this can happen very quickly, in her case overnight. They said all her organs were in good shape, which is probably why she lasted a week. So many things can happen!
Talk soon, love, Mary
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Hello Mary,
Thank you for your post. I can see what you mean about Blue Monday. I have found that January so far has been particularly cold and dreary but sometimes a day may be unusually mild and the plants in out grounds seem very confused. So many of them are blooming!! I do not know how Blue Monday would apply to tropical islands.
I can imagine how you felt during those two cold funerals. I was shocked to read about your friend who died suddenly. It just shows you that you never know when your time is up. Over here lately there seems to be a lot of deaths from sepsis.
I see that the thread has gone into quiet mode. People are viewing but not posting. I sometimes think that patients must now have the basic information that they need to go through their cancer journey.
Here in Exmouth I find I am just longing for Spring. The dark evenings can be so long. I have been watching a programme with Michael Portillo, the Great Canadian Raliway Journeys. It is in twenty parts and takes us all across Canada. It has brought back a lot of memories. Michael Portillo makes it all very interesting. Have you seen any of his programmes where he travels by train all over the place. I am sure you would enjoy it if you can get to see it.
Let us hope the thread comes alive again soon.
Take care.
Love.
Sylvia xxxx
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Hello Mary, Sylvia and everyone,
I lost my ability to walk for 4 days with Paxlitaxel . Not just aching joints, but legs that didn't allow me to move at all. Whilst this. was happening, I developed a hospital acquired infection, Noro virus. So not able to get to the bathroom and this relentless virus has left me utterly exhausted and without a shred of dignity. Poor Michael has had to cope alone and then, inevitably, became a victim himself.
I'm still very unwell and can't possibly have my next infusion of Paxlitaxel later next week. I don't have any more appointments with my Oncologist, so can't discuss what happened to my legs. I do think that it was a very bad idea to put an infusion of Zoledronic Acid in with my treatment last time. I can find no other examples of this happening.
Thought I'd let you know what's happening. Forgive me if I don't post until I feel well again.
Best wishes to everyone.
Love,
Gill X
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Hi Sylvia,
I was told by the radiotherapists that what I was having was photon beam radiation. Maybe it's an alternative name for ion?
Fascinated to read today that the Czech Republic, which has a Proton beam centre, allows its use on the left breast (to protect the heart) but not the right. I don't see it being used for breast cancer in this country any time soon. I'm sure it will be kept for people who are unable to have photon or who have not benefited from it.
Susie
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Hi Gill,
Oh, the sheer awfulness of the norovirus. I've only had it once, about two years ago, and hope never to be struck down like that again. And unable to walk either!
Best wishes for feeling better soon.
Susie x
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Hi, Gill
This sounds awful! Not being able to walk sounds like you were very weak, when did you have your Paclitaxel? Was that on the 30th? If so, you may be on the road to getting stronger about now, I'm sure getting the Norovirus only weakened you further. How hard on both of you, I do hope Michael can recover and take care of you. I don't know much about Zoledrenic Acid so maybe it was that, maybe it was the combination of chemo reaction and Norovirus. Maybe all of the above!
I made a pot of chicken and dumplings today for a sick friend, it was what she wanted. I wish I could bring you some. I understand you don't feel like posting now, just get better, and Michael too.
Talk to you soon,
Love, Mary
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Hello Gill,
I was so sorry to read about the trouble you are having with the chemotherapy drug paclitaxel (Taxol). I was horrified to read that you had lost your ability to walk for four days on this drug. This can surely not be normal. Has anyone in your medical team given you an explanation for this? I would think you need one. Since it is well known that the taxane drugs, whether docetaxel (Taxotere) or paclitaxel (Taxol) can cause neuropathy in the hands and feet, which is damage to the nerves, then in your legs this must have been, I would think, something to do with nerve damage. Did you have a hospital stay because of this?
I ask this because you said you developed the hospital accquired infection Noro virus. People tell me this virus is very nasty. I do sympathise with how utterly exhausted you must be and how difficult the situation is, especially with Michael getting the same virus.
If that were me I would not be proceeding with any further chemotherapy until I felt completely recovered and had regained some strength. I cannot see how in your condition further toxic drugs can be of any use.
I am very surprised that your oncologist has not stepped in at once to see why you lost the use of your legs. I would be asking for an appointment.
What is the reason for zoledronic acid being added to your chemotherapy drug? I would think that paclitaxel would be bad enough without adding another drug such as this one. It seems to have become one of the flavours of the month lately. It is a bisphosphonate used in the treatment of bone disorders. I think they are now using it on breast cancer patients to prevent spread to the bone. I am posting the page on zoledronic acid that I have taken from my BMA New Guide to Medicines and Drugs that is the latest edition. I shall leave you to have a look at it yourself.
Thank you for taking the time to post when you are feeling so unwell. I do hope that you and Michael will gradually start to feel better.
All is well here in Exmouth. It is cold and sunny today.
By the way, when I was going through treatment I know that bisphosphonates were being used for secondary cancer. Out of interest I did ask my breast cancer consultant and also the breast cancer homoeopathic consultant I was seeing, what they thought of bisphosphonates. They told me they were very nasty and should avoid them.
There is another bisphosphonate called alendronic acid that my oncologist wanted me to take for my chemotherapy induced osteoporosis, but I refused point blank. You will know that I do not like taking any medications and refused them.
Keep in touch and let me know if I can help and support in any way.
Love to you and Michael.
Sylvia xxxx
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Hello Susie,
Thank you for your post. I did Google photon beam radiation and discovered that it is just another term for ion beam or regular radiation. I think we all get the same kind of radiation if we need radiotherapy as the end part of our treatment. If you Google either photon or proton there are good explanations of the difference.
As for the Czech Republic, I did know that it had a proton beam centre. It is interesting that they allow it for use on the left breast to protect the heart but not on the right. As you say, it will not be in our country for routine use for some time.
How are things going with you? What are you doing for relaxation and leisure? I have been watching Les Miserables and have been impressed with it.
Take care.
Love.
Sylvia xxxx
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Hi Sylvia,
Just going about my usual business. To the Tate Modern this morning to see the new Bonnard exhibition. Bit cold by the river! Bonnard not really my cup of tea as I find the colours too garish, but I'm a member so I don't have to pay so thought I might as well go.
Otherwise theatre, cinema, Pilates etc. Also really enjoying Les Miserables, which I've never read.
Have my mammogram on Tuesday.
Susie x
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Dear all,
Just checking in to say hello to everyone.
I was shocked to hear about your problems on the Taxol, Gill. You poor, poor thing.
I echo Sylvia’s question re: why the oncologist has not got involved since you lost the ability to walk. This is surely not a “common side effect” that just needs to be put up with.
When my mum had the awful time on the AC- and particularly when she started getting heart trouble-her oncologist scheduled an appointment with her within a few days to discuss her continuing (or not). My mother really needed that because the heart episode was so scary. As I’m sure your episode was.
I expect you’re in no position to push for this right now- can Michael or one of your children push for it for you?
I’m also v sorry you contracted the novivirus. That sounds really grim.
As Sylvia said, you probably need quite a bit of time before you resume chemo again. As I have mentioned before, my mum had 5 weeks between AC and taxol. She needed every day of that. The oncologists said it was fine to have a break of that kind. I knowy mum was anxious it would have a detrimental effect vis-a-vis the cancer-risk-reducing properties of the chemo, but Oncology were pretty reassuring about that.
Anyway, all the very best to you and Michael.
To everyone else, I hope you’re doing well. Like all other UK posters, I’m thoroughly fed up of winter and the cold. I still have a very embedded sinusitis, which makes me feel like I have mild flu the whole time. It’s been going on for 2 months now, and I do wonder if it wil ever go away.
Mary’s story re: her friend is rather shocking- I have been doing a lot of reading about sinuses( as light relief from Triple Negative Breast Cancer;) and have come across the situation she described where a bacterial infection from sinuses can spread to the brain. It is rare, but obviously incredibly serious. I’m not particularlyworried about that for me-but I am very frustrated at how long it’s taking to shift this.
The Bonnard exhibition at The Tate sounds interesting. I have been meaning to see The pre-Raphaelites at The National Gallery. Hopefully I’ll make it before the end of Feb if the sinuses allow...
Anyway, morale-boosting thoughts to all and, in particular, to Gill at the moment.
Flora x
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Hello Flora,
Good to hear from you. Is your Mum doing all right with the taxanes?
Winter does seem to be dragging on and the great heatwave feels like it was last century. Let's hope that spring is just around the corner.
Susie xx
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Thanks Susie...
My mum has completed 7 taxane infusions( with a few delays of a week for various things) and her oncologist is hoping to get her to 9 and will then have a discussion re: continuing beyond that( I understand the “gold standard” is 12).
She is still feeling largely ok, but very tired and getting the occasional fleeting bout of pins and needles.
She was given a week off this time round due to elevated temperature, and was actually rather relieved to have it.
How is “post-chemo”life treating you? I hope you are feeling well and have been able to take up swimming again.
I love swimming, and one of the most annoying things about this sinusitis is that I can’t swim while I have it. Still, hopefully it will clear up in time for summer and the season of the outdoor pool..
Flora
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Hello Flora,
I feel completely well again three months after finishing all treatment. Have only been swimming about twice, I'm afraid, what with its being winter: I hope to get more in as the weather improves. I am back at Pilates. I still sleep a little more than usual.
Re the pins and needles, it was only after my last cycle of taxane that my toes became numb, but they don't give me any trouble.
Susie xx
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Hi, Sylvia
The weather here, too, is such that I am very glad that I took my break on a tropical island. At least it is fresh in my mind, that somewhere the sun is shining and warm on one's skin.
Flora, I have had the same sinus/sore throat/drainage problem going on since before Christmas too. I was worried about going on the trip, but felt quite well once there in the warmth. The sinus/allergy/rhinitis/hoarseness has returned once back here in the very changeable weather, it's for the most part very cold here but then with the occasional warmish, windy day that doesn't help things at all.
Sylvia, I looked at the program you are watching about the Canadian Railway. It looks very good, I see that it comes on the BBC. On my regular TV I only get BBC News of the World, but could probably get the Michael Portillo show online. That can be iffy though here in the country, I have a Smart TV, but my Internet connection is not the best, so streaming TV shows is sometimes not very good. I am not someone who likes to watch long programs on my phone. I could watch a lot of things when I am traveling, on my phone or tablet, but honestly when I am traveling I usually never turn on a TV, and just use the phone for news flashes, directions, calling and texting, and checking on things here, of course!
I have checked out some of the Canadian Railroads with a mind to do one of the trips myself, but haven't got very far with that planning. Many moons ago a friend and I crossed the provinces of Canada, starting in British Columbia , and stopping before we got to Quebec and then going south into the US. We were young and adventurous and were on foot and catching rides. What a big and beautiful country it is!
I am hoping to get back to my issue of WDDTY very soon. The focus of this issue seems to be on Alzheimer's/dementia. The hopeful words on the cover are Healing (and Preventing) Dementia. This made me remember an incident shortly before I was diagnosed with BC. On one of very many trips of taking my husband to the General Practitioner, husband had his checkup and the doc asked me how I was. I told him I was quite thin and tired from not sleeping well, and I just felt scattered and frazzled. He left and came back with a few boxes of sample drugs and handed them to me. I put them in my pocket and looked at them when I got home. They were strong B-vitamins, and clearly were labeled as helpful with cognitive impairment! This bothered me a bit, since I had quite a few relatives with dementia on my father's side of the family. The next time I saw that doc, I asked him if he thought I had cognitive impairment. He responded, "What do you think?" I said "Not any worse than you do!" I did not notice any difference by taking these vitamins, but I'm sure they caused me no harm. From my skimming through the mag the other day, I think the large B vitamin doses are supposed to be helpful with staving off dementia. So the doc was probably on to something, but it did annoy me that nobody, including my doc, seemed to understand the heavy stress of caring for an ill spouse single-handed, while taking care of cooking, cleaning, properties, vehicles and all that goes with it and then to come down with a serious illness myself. I think what I was really looking for was a hug, as dumb as that sounds.
I do wonder if Gill had another bout with neutropenia; when I was hospitalized with it after my first treatment, I really did feel so weak I didn't feel as if I could lift my arm off the bed, much less my legs. I do hope she can find out. It seems like malpractice if she can't talk to her oncologist and have some answers.
Talk to you later, love, Mary
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Hi Gill,
So sorry to read all the terrible things you've been going through. I pray by now that the side effects and infection have subsided!
Is Paxlitaxel the typical treatment for triple negative patients? Is it always combined with Zoledronic Acid? There are so many chemo combinations that it gets confusing.
To all, were you able to see the Super moon in your area? It was 31 degrees (the freezing point in Fahrenheit is 32 degrees) in our area, so I could only stay out a few seconds in the cold at near midnight. But what I saw was simply beautiful. It would have been too cold for me to try to photograph is, especially since I don't have a lens with the proper focal length.
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