More appointments and info

A short update from last week.  week my hemotologist confirmed that I have bone marrow cancer, along with bone marrow cancer.  I got measured, and scheduled, to begin radiation tomorrow, noon at General, and see my oncologist tomorrow at 9 at Queensway Carleton (about a far drive out of town!)

I’m continuing to be in lots of pain in my hip, interrupting sleep and appetite despite a bunch of pain killers.  Liam has been staying over here to look after me, while Liam is away in Montreal, since Sunday.

I’m  still not really go-out ready.  Hoping the radiation will help with radiation and the pain.  Though I seem to recall pain flares last time,  hope not this year.

The main questions I have for my oncologist for tomorrow:

1.  Last week, the hematologist  let me know that my bone marrow biopsy came back positive for cancer.  Does the biopsy provide further information about amount or extent of the cancer in biopsy?

2.  How does cancer in biopsy, generally, affect prognosis for kidney cancer? Is it a common place of progression?
3.  How does rapid growth in bone cancer while off treatment
(3.4×1.6 to 5.5x 5.6cm from July 6 to August 31) affect prognosis and pain?
4.  Now that platelet issues are determined to be caused by cancer in bone marrow,
rather than idiopathic issues or Sutent, how quickly is it possible to return to treatment on Sutent; given a) duration of prior stability on sutent; b) likelihood of tumour flares on other treatments; c) likelihood of current further progression off treatment from Sept 1 to present, and significant increase in pain?
I also have an assignment from my PSW and home care nurse, both given today, to call CCAC and see if I can get more help.
None of this (radiation treatment starting, trying to advocate for nursing and treatment that my doctor hasn’t wanted to return to) seems like a stellar thing to do mid-move yest week; but we’ll survive!


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Short update

Hello and Happy September!  It’s been quite awhile since I’ve posted.  Although I’m still waiting for some info (more on that shortly), I do have some updates to pass along.  Rather than ask you to wait with me, I’ll get busy and pass along the current stuff.

First, my platelet counts have continued to bounce up and down since my last post; down to 44, and 32, back up to 65, back down again.   The hematologist has suggested a platelet transfusion.  I’ve declined this so far, given the very awful reaction I had to a transfusion back last January.  Although I feel fairly weak, I don’t think it warrants another session of feeling so poorly.

My CT results from August 31, unsurprisingly, show progress in the cancer in my lungs (number, size, and fluid in lung and chest), and in my abdomen (increase in number and size, new lesion in liver), increased size to hip bone metastasis (from 3.4 by 1.9 since last year, to 5.6 by 5.7 cm now).  This explains why my hip pain has progressed so quickly and why I’m lying down to relieve the pain, as well as taking more pain killers.  My oncologist is also going to ask the prior radiologist if it is time for more radiation to that hip.  It won’t reverse the progression of the disease, but might alleviate some pain.  Waiting to hear from one or the other about if this is is an option, while thinking about having to start protecting my GI system from the pain meds.

Also recommended, and also awaiting results:  I had a bone marrow biopsy done August 29 (luckily, also during the visit of Gloria, who was wonderful to spend time with, and also wonderful at calming me down about this process.  Unfortunately, the results came back that week, ‘sample insufficient’.  So I’ve had a second one taken this past Wednesday, September 7.  Am awaiting results (sometime next week?) to help determine a more likely diagnosis for these flying platelets, and potential course of treatment.   It gets a bit frustrating, sometimes; though there’s no point in getting so.

Meanwhile, we are starting talks/preparations to get ready to relocate for two months October and November, while the elevator is replaced in our building.  Figuring out what clothes to bring is a bit complicated, with the thermometer stuck at 30 this past week.  Will have to figure out for three seasons I guess.  Then there’s all the meds, cushions to make my hip comfortable, throws (if last winter is any sign), food, cooking implements, dog medication and supplies, reading material, computer, cords, etc.  It’s going to be a bit complicated, because on the same day there are six other limited-mobility folks also moving elsewhere from our building.  Hopefully the relocation, and forced small-space living, won’t be to hard for us.   Luckily we like one another! and Regis, at least, can go out.

With any luck, I will have some results, and treatment on the go, to share with you by next time I post.  Meanwhile, enjoy the ongoing sunny weather and happy start of Fall activities!

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Colour us A Little Relieved

After waiting, while getting biweekly blood tests, for about three weeks, we saw the oncologist Wednesday and hematologist Friday at the General.   There was somewhat positive news from each appointment, which I’m happy to report.

My oncologist Wednesday advised that my platelets had come up to 79 Monday, after round two of steroids.  She advised that she would touch base with the hematologist early in the next week, then call me, to discuss the collective treatment plan.  If my platelets remain around this level, she does not want to put me back onto Sutent, as there is a risk that Sutent will lower the platelets further.  If I am back-and-forth on steroids to bounce up the platelets, then I am not a candidate for Nivomulab, which increases the immune system also (the overworking immune system is what attacked the platelets).  If the hematologists continue to need to monitor platelets for some time, however, she suggested that we could apply for a second line therapy, either Everolimus or Affinitor, which do not affect the platelets the way that Sutent can.

Friday, the hematologist advised that my platelets had stayed up at 68 by Thursday.  Even more promising to me was that they had come up from 23 to 45 during the break from steroids – so maybe recovering on their own.  She advised that if my reaction was idiopathic (not caused by Sutent), there was a 30% chance that the platelets would recover on their own after two courses of steroids.  About 30% of people have an increase in platelets and then they drop off again at some point (could be weeks, months or years later).  In about 30% they do not increase at all.

She advised they would need to continue monitoring weekly to see where the platelet levels go – whether they stay up at about 70 (she said anything over 50 was relatively safe), increase or decrease.  They do not continue with courses of steroids, but only run the two courses.  However, there are other drugs which boost the bone marrow to make more platelets.  These drugs are only available with insurance, and may or may not be used in my case, depending on how the monitoring goes.  Generally the drugs have not been used in cancer cases, so this needs to be considered.  She confirmed that they would not do a splenectomy in my case.  She did say that she would be consulting with my oncologist about whether to do a bone marrow biopsy.  If there is cancer in the bone, there is also a chance that there is cancer in the bone marrow, which could also have led to the loss of platelets.  The biopsy would take 15 minutes and be done in an examination room at the hospital.

The hematologist said that they were still not sure whether the drop was idiopathic or caused by the Sutent.  She said in her view, it was likely enough that it was Sutent that Sutent should probably not be retried.

So, we are relieved that my platelets have come up enough that I am not currently in ‘dangerous’ territory.  I can resume some of my ordinary activities.  We are relieved that there may be other treatment options for the platelets, if they turn out to be necessary.  We are disappointed to hear about Sutent probably no longer being an option, but relieved that there may be other cancer treatments available to try.

I can also report that we saw two movies within the past week.  One highly recommended:  ‘Captain Fantastic’, with Viggo Mortensen, which we saw with Beth and Craig.  One (last night) rather ho-hum: ‘Cafe Society’, Woody Allen’s latest, in which he seems to have run out of gas in the tank.  However,  still appreciating movies as a great distraction from all of this medical stuff.  Recommendations appreciated.


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Home and Waiting

I made it back home from Hospital Sunday evening, after finishing two rounds of immunuoglobin therapy to stop my immune system from attacking my platelets.  My platelets came up to 31 (still very low), so I was discharged on two days’ steroids, also to stall the immune system.

Unfortunately, after two more rounds of blood tests (Monday and Thursday), my platelets have come back down to 23.  I called in to my patient designated nurse, but so far there are no plans to readmit me.  I have to take precautions not to bump or cut myself so there won’t be any internal or external bleeding.  I have an appointment with the hematologist on August 12th.  I’ll keep going for more blood tests Mondays and Thursdays pending that appointment.

I still feel very weak and tired, and also nauseous.  Managed a bit of soup yesterday.

I had really hoped that this was a temporary idiopathic thing that my immune system was doing.  I’m doing my best to be careful in the meantime, and not too terrified.

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Unanticipated Hospital Stay

This past Wednesday I had an appointment with my oncologist.  She confirmed, at the time, that while my scan results were kind of 50-50, she could make a case with the Ontario funders that Sutent was still being effective and should be continued.  She sent me for additional bloodwork after the appointment to check on my platelets.

After the bloodwork, I received a phone call to come into hospital Thursday morning to do more bloodwork to check platelets.  The hospital then called at noon Thursday to ask me to come into hospital.  I met with the oncologist on duty in the chemo bays.  She told me that my platelets had gone very quickly very low (below detectable levels), and I was at high risk for bleeding or internal bleeding.  Initially she proposed a platelet transfusion; however, after speaking with hematology this plan was revised.  Since my immune system appeared to be attacking platelets, they had to find a way to shut down this response rather than just giving the immune system more platelets to attack.

I was admitted to hospital Thursday – Sunday, and had two courses of immunoglobin treatment overnight on Thursday and Friday.  I had a strong reaction to the blood in which the immunoglobin IV treatment was delivered on Thursday, having a high fever and inability to take in enough oxygen.  I did not get a wink of sleep Thursday or Friday.  Friday night I did not have such a strong reaction, but was still kept awake by the constantly changing IV bottles, beeping machine, and vitals checks every 15 minutes.  I slept from 2:30 to 5 a.m. and was then awake for Saturday.

It was odd to feel so much worse after treatment than I had felt coming into hospital.  My platelet levels did come up to 17 and then 23 by Saturday morning.  I understood that I’d be released home (for a decent meal! and sleep!), but was told by a junior fellow helping the doctor that I was to stay for one more night.  I was put on steroids temporarily (for 4 days) to continue to suppress my immune system and prevent more attacks on platelets.

Luckily, I put out a call asking for visitors and my Ottawa friends responded in spades.  My aunt and cousin, and several groups of friends and families were very kind to come by and keep me occupied and happy while I waited to be able to go.  My son and husband were sweet enough to take me out for a walk in the hospital gardens in my PJs.  It felt really good to get a little fresh air.

Investigations were conducted, but the hematologists were unable to tell us whether there was a cause for this sudden immune system glitch (whether brought on by chemo meds suddenly = unlikely; could be the body idiopathically doing this on its own?).  I have about three weeks off Sutent while they continue a course of steroids (4 days), 10 days off, steroids(4 days), and continue with blood tests every three days.  I am worried about whether this is something that can be treated and contained on an ongoing basis.  I am also worried about how this will affect my mid- or long- term cancer treatment and survival.  So far, lots of questions.  but also so far, glad to make it home last night and be cozy this morning pre blood test and echocardiogram.



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New Scan Results

After being back on an increased Sutent dose for one month, I had more scans last week.  We picked up the reports early this week.  The good news is that the Sutent seems to be back shrinking the tumours again.  The metastases in my lungs and liver are all smaller, and the met in my hip bone is stable.   On the other hand, my lymph nodes in my lung and liver area are increased in size.   Not sure what this means (whether I can stay on Sutent or not), but will see my oncologist next week and find out.

In the meantime, my body is having a bit of a hard time.  My last round of Sutent, I still seemed to have some energy left at the end of the two weeks ‘on’.  This time, I’ve had high BP, serious fatigue, nausea, vomiting, diarrhea, bleeding mouth and nose, sore throat, and more sores on my feet.  Today I wasn’t able to take my last dose as I had been vomiting all night and this morning, and thought I wouldn’t be able to keep my meds down.

I am super lucky to have a wonderful husband who looks after me through all this.  Also friends who’ve come all the way from Toronto to visit, and don’t mind waiting while my stomach settles so that we can see one another.

I am thrilled that Sutent is keeping my tumours stable and keeping me alive; but very much looking forward to the break week and a bit of relief from these side effects.

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Quick Update

I made a call to my oncologist’s office to check in on the CT chest scan results and what to do about them.  We agreed that beginning the end of this week, I will go back up to the higher dose of Sutent (50 mg/day, rather than 37.5).  We will then need to ask for new scans before the end of July.

The reason for the abbreviated time before scans is that the Opdivo/Nivomulab compassionate access program closes at the end of July.  As I mentioned in an earlier post, Nivomulab is one of the new immuno-oncology drugs that has been made somewhat available to Canadian patients.  It has provided good results for the patients it works for; although it only has worked for 20% of patients (vs about 80% for Sutent).  Although Health Canada has approved Nivomulab for mRCC patients, the province has not put in place any kind of financial coverage for it.  The compassionate grounds program is essentially Bristol Myer-Squibbs providing the drug without charge, for patients who fit within their qualifications, without cost.

If Sutent is really beginning to fail and the tumours increase in size even on the renewed higher dose, it may be time to try Nivomulab.  I have my concerns about Nivomulab, given it’s lower rates of response, but it might be the way to go.  We’ll hopefully have more information by the end of July.

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