So there’s good news and there’s not so good news….

There’s good news and there’s not so good news. I can’t say there is bad news because that just isn’t right.

Today has been challenging. I left home at 8.30am because I wanted to be ultra sure I got to the hospital on time and could get my bloods done before my appointment for scan results. I cannot believe it took me an hour and half to go a normal twenty minute journey. That was fine as I got there just in time for my appointment. But then had to wait over an hour to be seen. And sadly not by Prof Harris as he was away. (We were both so looking forward to seeing the Profs ‘happy’ tie  )I knew as soon as they told me that I was to be seen by another senior oncologist that the news was not going to be great.

To be honest that was the worst of it. Waiting. The knowing. The dread. The look on both of our faces. That’s the worst feeling. Once inside the room and sitting with the oncologist then anticipation is over.

The news wasn’t what I expected. I had a really good feeling that this time was going to be ‘my’ time. That something brilliant had happened. Everything inside me tells me I am well. I feel not only physically brilliant but mentally and emotionally. The scan results as usual are confusing and do not correlate to the previous scan. It’s like trying to decipher code. But on looking at the actual scans on screen I can see some changes. But not much.

So that’s a positive. The long and short of it is… I have had, what’s known, as disease progression in the tumours in my lungs. They appear to have increased by about 20% in the right lung and lymph node. The left lung doesn’t look like there has been much activity but they ‘assume’ that they too have increased. (Would it be so hard for a bloody radiologist just put details of everything they see? And can they please not confuse upper and lower lobes?!) We are still talking small sizes no bigger than 2.3cm. But that is still an increase and I have to say I was hugely disappointed.

BUT then I was hugely relieved.

I have not had any disease spread to any other organ or bones. Phew! That makes me so happy! So I am still containing it but the onc reckons that the chemo, Vinorelbine is not doing anything. There is an argument there that it could be doing something and that in fact the tumours grew a lot in the time I wasn’t taking any chemo and have gotten small since but the onc’s gut feeling is that it isn’t working.

So onwards to the next treatment option. It has been suggested I start Eribulin. Nicky, the oncologist was excited by Eribulin and has seen good success and it could help me survive a lot longer. It sounds like she has to request funding for it and is only given after a patient is on their third line of chemo. The down side is that I would lose my hair again and probably feel rotten and it’s given intravenously.  But that’s what they said about the last year of chemo. I don’t relish being bald again but hey ho… It’s just hair and men lose theirs all the time! The other option is Carboplatin and Gemcetibine. This we have heard of. And it has been quite successful for many.

Pete and I sat there so overwhelmed with what to do next. It’s so hard making decisions when you simply do not feel ill and when every cell in my body is saying, ‘don’t have any more treatment’. But the other part of me is saying, ‘give me it all! I don’t want to get any worse’. It is so hard making decisions about life and death.  We decided to let the onc know tomorrow once we have thought about it but we think we have already made a decision.  I am going to finish this cycle of chemo I am already on. Then I have a few weeks till I go to Switzerland to have GcMAF. In between now and then we hope to hop to Germany and have some more DC therapy. I have contacted Doc Nesselhut and await his response.

During our appointment the onc did mention that maybe, just maybe I could have the larger tumours ablated. We have discussed this with Prof Dalgliesh before but he hasn’t got back to me. So we agreed for her to try and get the go ahead through the NHS. Nicky did say not to get our hopes up. Why would I? It is the NHS after all. The reason for not doing it would be that I have other lungs mets and that it would be pointless. I am sure the radiographer would feel differently if it were his life or someone he loves.  Any who….

I had a little wobble, a few tears afterwards, but then had a big Bear cuddle and came home. Pete went back to work and life goes on. I feel remarkably well. I am bit confused as to what I am doing differently that is causing the canSer to grow. I feel maybe that the treatment in Germany needs to be intensified and more often. There are other things I could be doing but then there is so much out there to choose. It’s so hard to know what to do next and I wish someone would just tell me! But what works for one may not for another.

All I know is that nothing is different for knowing this information. Really not a great deal has changed. When the tumours were that large before I had pericardial effusion. There is no mention of that. So the lymph nodes are currently working OK.

So not all bad. See the positive in every situation. We also got to meet a lovely TNBC supporter whilst waiting. A canSer patient who looked really well and came and talked to us. It’s so great knowing that people follow us and our story and that they feel it helps.

I wish I had the best news for everyone and could tell them that there is one particular fail safe treatment. But I can’t. Not yet at least. We are working on it!

So what’s next? I have to consider other treatments such as intravenous vitamin C, chemo-perfusion, mistletoe, RGCC testing, Halean 951 and more. Not sure where to start. Best get researching some more….

 

Essentially stable disease

So I received a copy of the letter that goes to my doctors after my clinic appointment today. I don’t know why I bother reading it as I always get a little bit flustered by it. It states that I am on palliative care… I have mentioned this before but I must be feeling a bit sensitive as I really hate the fact that it means treatment without a cure. Palliative care leading to end of life care….. Grrrrr…..

I simply cannot be dying from this disease.  It’s not acceptable and I don’t believe for one minute that the pulmonary nodules in my lungs have had little change in size since last time. The words written in the letter state ‘essentially stable disease’. Essentially? So the fact there are now none in my lymph nodes doesn’t show that there is a regression of it?

I am unsure why I get ruffled by the stupid comments in the letters. I wish they would be more positive. Other than stating I am tolerating the capecitibine incredibly well there isn’t much else that reads positively. I don’t know why I would expect them to feel the same as I. I expect they have seen many more like me die. They expect me to be the same. I simply won’t have it.

I’m tired again today. I had a hot bath with olbas oil last night before bed then had quite good sleep until my throat started to get all tickly. I spent a few hours coughing. My voice is a bit hoarse but it hasn’t gone completely. I’m hoping it will pass by quickly….

 

Maybe something has changed in me and that is why I’m fighting off this illness. I wish I could see inside myself and know what is happening with the canSer in my lungs. I could visualise better if I knew what they looked like. I must spend more time visualising…

 

Pete came across some more news about triple negative that sounds really promising;

Obgynnews.com:

Metastatic breast cancer cells are even more adaptable and able to evade targeted treatment than researchers suspected as recently as a few months ago, which means they present a heightened treatment challenge that in many cases may be overcome only with multiple targeted therapies delivered at the same time.

The findings were discussed at IMPAKT 2013 Breast Cancer Conference, sponsored by the European Society for Medical Oncology.

 
 

The new wrinkle in drug resistance has been dubbed reprogramming, a way that metastatic breast cancer cells (but presumably a property shared by other advanced solid tumours’ as well) quickly respond to a drug that shuts down an essential cell protein, a kinase, by turning on other, alternative kinases within days of drug exposure. Many of the new, targeted therapies that have successfully treated advanced-stage breast cancer and other solid tumours are kinase inhibitors, such as trastuzumab (Herceptin) and lapatinib (Tykerb).

Using a newly-developed technique for assessing many different kinases within a cell at once, Gary Johnson, Ph.D., reported that treatment of isolated, advanced breast cancer cells in vitro with a kinase inhibitor drug produced within a week a dramatic shift in the cell’s overall kinase profile, something he calls the cell’s “kinome.” Part of this reprogramming response probably occurs because of new genes that the cancer cell turns on or up regulates, and part is probably driven by epigenetic changes in the cell, said Dr. Johnson, professor and chairman of pharmacology at the University of North Carolina in Chapel Hill.

Clinicians familiar with this finding quickly recognized that the phenomenon is an important, new barrier to successful treatment in patients that will require creative solutions using rational, multidrug, or multi-sequence regimens.

 
 

Dr. Lisa A. Carey, an oncologist who collaborates with Dr. Johnson, said she believes that reprogramming may explain her recent, frustrating results treating metastatic breast cancer patients with an investigational inhibitor of the epidermal growth factor receptor (EGFR), a tyrosine kinase.

“We gave the inhibitor to patients with triple-negative breast cancer, where the EGFR is clearly unregulated, a big, juicy target, and yet only 25% of the patients responded. Most of the time, the cancers had alternative mechanisms to keep the EGFR pathway active,” Dr. Carey hypothesized based on Dr. Johnson’s recent findings. “The good news was that 25% of the time the treatment worked,” said Dr. Carey, professor of haematology oncology at the University of North Carolina and medical director of the university’s Breast Centre.

The new finding on breast-cancer cell reprogramming “helps us understand why the EGFR inhibitor didn’t work in most patients, it helps us understand what cancer cells do, and it helps us design our next approach. Most cancer drug development right now targets kinases,” she said in an interview.

“One way to approach this is to use multiple agents at once, but if you add drugs you also add toxicity and expense. And in some patients the cell doesn’t reprogram. We need to understand how reprogramming works,” with the potential to develop agents that block reprogramming instead of trying to deal with the changes that reprogramming causes. “This is an explanation of why patients don’t respond to even targeted treatments, and it gives us a way forward to potentially prevent it. Reprogramming is reproducible and potentially targetable. I think we can get around it.”

 

Raising awareness in the national media? Gulp…

I couldn’t sleep last night as I was too excited… With the generosity and kindness continuing… A friend who owns  a friend who owns a PR company Blythe Weigh, has kindly offered his time and skills by trying to make this site connect to many more people.

Our ultimate goal is to raise awareness of triple negative breast cancer and share information and gain knowledge and hopefully save lives by raising funds so that other survivors can have immunotherapy in Germany too.

Im certain that the ten point plan can help many people with any canSer especially triple negative breast cancer but also help many make positive changes to their lives to prevent canSer.

If we can help just one person then we have achieved something. By making this site more prevalent lives will be saved.

So back our PR friend. He has in his own time contacted the media such as the BBC, ITV, The Sun, Daily Mail plus lots of magazines. We are yet to find out if I’ll be on tv or in the news (which is why I was so excited last night- the thought of talking on national tv to Holly Willouughby and Phillip Schofield- Arggh!) Anyway back to Earth.

I want to thank yet another true friend for their precious time and selflessness.

Lets hope that as its Breast cancer awareness month in October that we can get support, raise awareness and gain more info to help our fight for many women.