My Mum Mags

Dear All,

I thought it might be helpful to provide a brief update on Mum and where we are.

The second opinion on reading the Foundation One test concurred with the first view. There was no genomic alteration/mutation where anything (medication or trial) that was available to help Mum. We were told this was a very surprising result.

As mentioned in my previous post, the SIRT treatment looks as though it has had no impact/effect for Mum. Mum had two separate SIRT treatments: one in November 2014 and one at the beginning of Feb 2015. First scans at the end of March 2015 showed the tumour and mets in the liver had unfortunately progressed. We need the next scans to take a conclusive view.

My key warning to those now who might be considering SIRT is to think very carefully about having this treatment. The problem with it is that there was a need for Mum to come off GEM/CIS to have the SIRT between October 2014 and March 2015. In Mum’s case GEM/CIS had been doing a good holding job (stable in the liver/shrinkage on the boney mets for over a 9 month period). The lack of chemo for 6 months whilst Mum tried for SIRT has allowed the CC to to regrettably flourish….both in the liver and the mets. Perhaps the vile CC is “now out of the bottle” and we will not be able to get it back in

The response to the boney mets developing has been for Mum to have local external beam radiotherapy….as she had a number of bumps appearing on her skull…and other aches and pains in other parts of the body….where the PET scan was also showing CC activity.

At the beginning of April Mum went back onto GEM/CIS chemo. We have had a couple of hiccups since then. On one chemo day her hemoglobin levels had dropped and she had to have a blood transfusion. Her blood was fine the following week. We have this week past had another drama. Mum was seeing some blood in her nasal mucus. I reported this to Mum’s onc by e-mail and he sent Mum into hospital for tests. Mum’s platelet count had dropped. She had a further two units of platelets and two units of blood on Thursday/Friday.

Mum’s blood had been fine/stable up to the point prior to having any radiotherapy. Here is perhaps another lesson/thought. Perhaps don’t be too demanding to get radiotherapy treatment. I think we may have pushed too hard for it in Jan-March 2015 and we may have now screwed up Mum’s bone marrow…ability to produce blood with stable levels. Anyway, we had the platelet scare this past week…Mum’s off week from chemo….so hopefully she will be able to have her chemo this coming week.

So we are just waiting now for the next scans to see whether GEM/CIS will once again tun the tide for Mum….

Mum is otherwise generally OK and in reasonably good spirits.

The latest thing we are thinking about is whether Mum speaking to a therapist might be useful. Mum’s thought is “what can they do or say…that might help in these circumstances?”

Anyway….I hope others have better news to report.

Hugs and best wishes to all

Kevin

Hi Duke

Good to hear from you

Thank you for those reassuring words. It is very helpful

I am also very much hoping that the re-test for you on April 6 will allow you to go onto the new trial at Cleveland Clinic.

I think one of the the most important decisions has just been made by Mum’s onc…and we did not really input into it or question it. That decision is that Mum goes back onto Gem/CIS. The impact of Gem/Cis for Mum was beginning to wane (apparent from the scans) by the end of Cycle 8 back in September 2014. The onc nonetheless still believes that there is more mileage in Mum going back onto GEM/CIS now. I hope he is right.

As Mum has still only had GEM/Cis as a chemo treatment, I assume that another type of chemo will be offered to her before we fall back onto a second line treatment like FOLFIRI plus bevacizmab (see this very recent published article)-mentioned at the last consultation:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4326145/

On the Foundation One Test result, the report only came back with two mutations contained in Mum’s tumour. Only one of those mutations “MYC amplification-equivocal” has clinical trials currently relating to it. I am following up on that now

I agree with your point on contacting others for second opinions. I am doing this now. As you said (something along the lines of anyway) in an earlier posting “no time to mess about…or feel one needs to be at the behest of being ultra polite” in these circumstances.

Anyway…hope you have a lovely day. It is raining in London.

Best wishes

Kevin

Dear All,

I though I should update you on Mum’s journey with CC.

As a brief recap, Mum was diagnosed with CC following hip replacement surgery in March 2014. A biopsy of the hip bone was taken which showed she had advanced CC (IV) with secondaries/specs appearing at that time in about 3 other locations as well as a 7cm tumour in the right lobe of the liver and some other smaller satellite lesions in the liver.

We were told back in March 2014 that Mum’s age (72) and the staging/presence of secondaries meant that a surgical option was not basically available.

Mum had her hip replacement surgery and then rather valiantly launched into a GEM/CIS chemo programme.

We were basically told back in March 2014 that Mum might only last for a few months. She is still here…and still (rather miraculously) continues to valiantly fight back!!

Mum’s liver function throughout from diagnosis last year to the present day has been fine.

Mum’s programme of treatment for CC has been 8 cycles of GEM/Cis which she was able to tolerate very well between March 2014 and September 2014 The GEM/CIS did a mop up of the secondaries and kept the tumour in the liver stable for over 7 months. Mum did very well on GEM/CIS chemo.

We then became a little bolder and decided to try SIRT to get some shrinkage of the tumour in the liver.

Mum had to come off chemo to have the SIRT treatment. She had two SIRT treatments. One in November 2014 and in early February 2015. We have just received latest PET /CT scan results. It does not look as though SIRT has worked for Mum…which is obviously very disappointing.

The only good thing perhaps for Mum in having SIRT is that it produced no bad side effects….for both separate treatments…other than her feeling tired.

The latest scans are showing progression in the liver and elsewhere in the bones. We had to gamble (to come off the chemo) to have the SIRT. Mum has been off chemo between October 14 to March 26th, 2015. Coming off chemo was the gamble to have SIRT…and regrettably it has not for Mum paid off.

Mum went back onto GemCIS this week. Let’s pray it will kick back in…and give some more time.

Perhaps the moral here might be (and might not be as well) that the oncologists might sometimes be boring and conventional in their treatment proposals and might, for instance, only push a chemo solution (as was the case here). I basically pushed for the SIRT treatment here. Mum’s oncologist was not convinced SIRT would be helpful…and he was right.

We also now have the Foundation One test result back which I will share in a separate posting.

Best wishes

Kevin