My Mum Mags
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- This topic has 66 replies, 9 voices, and was last updated 8 years, 11 months ago by darla.
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May 12, 2015 at 12:35 am #86929marionsModerator
Kevin….I agree with the others. You made an educated decision based on expert advise.
I have learned that SIRT treatment is minimally invasive and meant to improve life expectancy as well as improve patient quality of life. Bone marrow depression can occur with either treatment, gem/cis or radiation.
A nine month stable response to Gem/Cis is pretty much what we expect before drug resistance necessitates a change of chemo agents. We have seen positive response to gem/cis from anywhere around 3 months to well over a 1 year period. Eventually though all patients need to move on to other treatments.
Feel free to place the link to the BBC Cancer special to another thread. Please know though that it can’t be accessed by US viewers as it is restricted to the UK only.
Wishing for all good things come your Mum’s way.
Hugs,
MarionMay 11, 2015 at 5:50 pm #86928gavinModeratorHi Kevin,
Thanks for the update on your mum and how everything is going for her. Sure wish that the news on your mum was better and my fingers are crossed that the Gem/Cis does it’s job and hope that the next scans show some good news for you both. Loads of positive thoughts are heading down the M74,M6 and then the M1 to your mum in London!
Glad to hear that your mum is in reasonable spirts and I hope that there is something that can be done to lift them. I think that perhaps a therapist might be able to help with that if your mum was to talk with one with an open mind. I guess it wouldn’t help to try. For the benefits of our American friends here on the site, seeing a therapist to discuss anything is not like it is in the USA I would argue. Not really a British thing perhaps but what harm could it do Kevin?
Another option for your mum may be a daycare center every now and again. My dad was sceptical of this when it was suggested to him, closed mind and all that but we went once so he could see what it was like and he loved it there at the Macmillan centre. Not depressing or full of people moaning about things at all and he had a great time there. Do you think that your mum would be up for that Kevin? Or another idea could be going to the local Maggies Centre, I assume you have a few in London? There your mum would be able to talk with others in the same situation as herself and that might help as well. Just a thought.
My best wishes to you and your mum,
Gavin
May 11, 2015 at 8:06 am #86927kevinjMemberDear Catherine and Duke,
It is good to hear from you.
Catherine-I read back through your feeds. I am really pleased for you and your Mum in that your Mum currently seems to be doing OK.
Duke-good to hear from you…as always. It is always helpful and reassuring to know when others have encountered similar issues. Thank you
We have had a TV BBC documentary on (adapted from a book/blog) called the “the C Word” last week. It has caused quite a stir of interest here. It is a one-off drama. A story of life, love and cancer based on Lisa Lynch’s candid book and blog about her experiences.
http://www.bbc.co.uk/iplayer/episode/b05tr05b/the-c-word
You can watch the programfor free on the BBC I player (for the next 20 days). The CC community might like to watch this…so I will leave a moderator to repost somewhere more prominent if they think appropriate..
It is strange how C interests people. Another TV presenter, Lynda bellingham, here in the UK had her book/blog published just before Xmas: “there is something I’ve been dying to tell you”. It was top of the Best seller list here for over 3 months.
All the very best to you both
Kevin x
May 10, 2015 at 2:24 pm #86926dukenukemMemberI had been on carbo/gem for 8 treatments and the main tumor in the liver was still shrinking when they took me off. Why? “Standard protocol is only for 8 treatments because it might damage the kidneys.” There was no indication of any damage to the kidneys. This is what happens when you have an inexperienced onc. Never confuse enthusiasm with expertise.
I had the same issue with blood in the nasal mucus. Definitely correlated to low platelets. I needed greater than 80,000 to get a treatment. Dropped to 40,000 sometimes. Seems that chemo destroys platelets. My problem seems to be that they are being captured in the spleen and do not circulate.
Duke
May 10, 2015 at 10:39 am #86925middlesister1ModeratorDear Kevin,
Thank you for the update. I wish it could have been better, and will keep our my fingers crossed that the Gem/Cis works to keep it at bay. Although we all have second guessed ourselves at times, and feel pressure since it’s our loved ones lives and well-being, this is a disease where patients can have very different results. Please always remember that you are doing everything possible to help you Mum; and I’m sure she is grateful for your loving support.
Take care of yourself too,
Catherine
May 10, 2015 at 7:55 am #86924kevinjMemberDear 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
March 31, 2015 at 7:19 pm #86923kevinjMemberDear Lainy and Catherine
Thanks for your messages and good wishes.
Yes-we will carry on and hope for the best. I think I am out of “novelties” now for the moment…but let’s hope that something will come along.
All the very best to you both and your families
Best wishes
Kevin
March 30, 2015 at 9:26 am #86922middlesister1ModeratorDear Kevin,
I’m sorry the SIRT didn’t have great results, but it sounds like between the chemo and possible clinical, you have possibilities on how to move forward. I’m sure she appreciates you being there for her.
Best wished to you and mum,
Catherine
March 29, 2015 at 3:33 pm #86921lainySpectatorDear Kevin, I totally agree with what Duke wrote and know that you will never look back an wonder if you did the right things. You are a wonderful advocate and I hope the new chemo cocktail works. Good luck on that second opinion. BTW my husband was DX at 73 and he had the Wipple surgery which bought him 5 good years. No matter the age it is the knowledge of the Doctor! Please let us know what happens with the other opinion. Wishing you both all the best.
March 29, 2015 at 2:36 pm #86920kevinjMemberHi 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
March 29, 2015 at 2:05 pm #86919dukenukemMemberOnc’s don’t know everything. Mine pushed me into FOLFOX6 which basically did nothing – at best it may have held things stable for a few months, which is good news.
My FoundationOne report identified some genomic alterations. Since the FOLFOX is no longer working, my onc has no further options for me in the way of treatment. However, a new onc at the Cleveland Clinic has identified a clinical trial that he is conducting that I may be eligible for. I did the pre-screening but there is a problem with low platelets. I go for re-test April 6. If things are good, I start April 13. (In fairness to my current onc, she identified the “brand new” trial after I had been in contact with the Cleveland Clinic.)
Kevin, you have to make the best decisions you can at the time, based on what you know. CCA develops a resistance to chemo treatments. Sometimes not just one at a time, but broader. The commonality between my chemos is a platin-based chemical. Whether it’s cisplatin, carboplatin, or oxaliplatin, I think CCA develops a resistance faster with each new chemical. They are paired with other chemicals (gemzar, 5FU) which may help extend their usefulness, but nothing works forever. By bringing in the SIRT you were giving a new form of treatment a chance.
When the Foundation report comes back, it will list a few ongoing trials. If none are available to you, keep searching the Trials section here to find out what is coming out. Plus, Gavin is invaluable at posting new stuff. Watch his new posts.
After carbo/gem stopped working for me, my onc put me on gem alone which worked well for many months.
Experience of the doctors with CCA is of paramount importance. I was (maybe) the second one my onc had ever treated. The whole center had only treated four in three years. No second opinions there. Don’t underestimate the value of a second opinion.
Hang in there. We are all pulling for you and your mum.
Duke
March 29, 2015 at 10:52 am #86918kevinjMemberDear 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
March 9, 2015 at 6:32 pm #86917kevinjMemberDear Catherine and Marion,
Thank you for your responses.
I have now been through the Foundation Medicine website in detail. They actually have a great deal of very helpful and detailed information on the website. This includes an example of the form of the Report that is finally published following review of the specimen/with recommendations-see link below.
The Foundation scientists et al have even prepared a study paper relating the Foundation One test to CC.
Here are a few of the relevant links from the Foundation medicine website:
( From publications section):
New Routes to Targeted Therapy of Intrahepatic Cholangiocarcinomas Revealed by Next-Generation Sequencing:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3958461/
I think I have enough on this now
Thanks again for getting back
Best wishes & hugs
Kevin
March 8, 2015 at 4:41 pm #86916marionsModeratorKevin….somatic mutations are permanent alteration in the DNA sequence that makes up a gene. Hereditary mutations are those acquired by our patents and somatic mutations (non inherited) occur at some time during a person’s life and are present only in certain cells, not in every cell in the body. As middlesister mentioned, the test determines what type of alteration responds to a specific drug already established. Most likely it will be used in combination with other drugs.
Hugs,
MarionMarch 8, 2015 at 11:36 am #86915middlesister1ModeratorDear Kevin,
We have not had the testing, but from posts of others, I assumed that when the results came back, they not only include which mutations were present, but which drugs may work based on the mutations.
I hope others who have received results can chime in.
Very happy that the testing is moving forward- I would have been very nervous with the FedEx as well.
Catherine
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