Mrs R J was diagnosed with Stage 3 ovarian cancer on September 14th 2018. Some friends of Sparrow Chat have expressed their sympathy at this devastating news and to keep them informed of her progress I am including a regular bulletin.
UPDATE – SATURDAY 12th JANUARY
Following three-weekly chemotherapy sessions beginning November 5th 2018 and a CT scan on January 4th we had appointments with both the gynaecological surgeon and the oncologist on the 9th. We were informed the scan had shown a radical reduction in the ovarian carcinomas. She is to have a major operation on February 13th which will involve complete hysterectomy and removal of other affected tissues. Hospital stay is estimated at least a week, possibly longer. Meanwhile, a fourth chemo session had been scheduled for the 10th, but a recent blood test revealed serious depletion of blood platelets (another side effect of chemotherapy) so further treatment has had to be postponed until the 17th.
While it is heartening to hear the chemo is working, this whole dreadful business is a living nightmare. The toll of repeated chemical treatments on my wife has been devastating. Her weight has improved slightly in the last weeks, but she’s in constant muscle pain, has difficulty walking more than a few steps, and has very little quality of life.
Seeing her suffer in this way is almost too much to bear.
UPDATE – MONDAY 21st JANUARY
All chemo has been stopped. The session due on the 17th was again postponed due to a low blood platelet count. It’s hoped it can recommence Thursday. A blood sample was taken today for analysis and we are to see the oncologist tomorrow.
UPDATE – SUNDAY JANUARY 27th
As she has missed two chemos due to blood problems it was considered undesirable for her to continue further with it, as it would mean putting back surgery into March. Instead, the surgery has been brought forward two days and she will now have the operation on February 11th, rather than the 13th.
The oncologist prescribed Prednisone as a five day regime to help with the muscle/joint pains. It worked wonderfully for three days. I’ve not seen her so pain-free and revitalised since this all started. On the fourth day the pains came back with a vengeance and we are now back to the pre-prednisone state, where she cannot sleep for the pains and has similar symptoms to severe arthritis. It does tend to ease a little through the day, but returns at night. We may have to contact the oncologist for further medication.
UPDATE – FRIDAY FEBRUARY 15th 2019
Mrs RJ entered hospital on February 10th for a major operation next day that would remove her reproductive tract and any other cancer affected organs it was possible to take out.
The operation was successful in removal of the affected organs, but although it was possible to ascertain that no malignant lesions had penetrated the large intestine, a number were discovered on the outer wall of that organ and it was not possible to remove them by surgery.
As a result of this it will be necessary for my wife to undergo further courses of chemotherapy (three or possibly four) in an attempt to kill off these lesions. As yet it is not known when that will start.
She has spent four days in the Intensive Care Unit but it is expected she will be moved out to a regular hospital room today or tomorrow.
UPDATE – MONDAY FEBRUARY 25th
My wife was moved out of Intensive Care and into a standard hospital room after four days. After spending ten days in hospital overall she was able to be discharged and return home on 20th February. A nurse is visiting every other day to change the dressings and check all is okay. So far she is doing well.
We see the gynecological surgeon again on the 28th. Hopefully, we will be told then when the next chemo is to commence.
UPDATE – SATURDAY MARCH 9th
The surgeon was happy with Mrs RJ’s progress. Everything seems to be healing okay. The dressings have been removed and a nurse is no longer required to visit. There was an appointment with the oncologist on the 5th. She thinks another fortnight is needed before further chemo. We have another appointment on the 19th. A blood test on the 18th will determine if the chemo can go ahead.
Overall my wife is doing well and recovering from the operation. She is slowly gaining weight and her hair is now over half an inch in length. Sadly, she will probably lose it again during the next chemo sessions.
UPDATE – MONDAY APRIL 8th
At our appointment with the oncologist on the 19th March my wife’s blood test was good, but the oncologist was concerned about the sudden drop in blood platelet count after the three pre-operation chemos. She said it was due to one of the chemo chemicals being toxic to the bone marrow, where the platelets are formed. Instead of a further three or four chemos over three-weekly intervals, it was decided to try weekly chemo sessions (every Thursday), using a lower dose, over a six to eight week period.
Needless to say, my wife was not very happy with the idea of six or eight weekly chemo sessions, but there seemed no alternative. All went well until after the second week, but a blood test the day before the third session indicated a huge drop in the platelet count, coupled with a further drop in white blood cell counts.
The third session was called off.
We now wait to hear if her blood has recovered sufficiently to stand another session this Thursday (11th April), or whether it will be called off again.
UPDATE – SATURDAY MAY 4th
After the first two post-operative sessions of chemo on the 21st & 28th March, the following week’s blood test showed a marked decrease in platelet count resulting in cancellation of the session scheduled for the 4th April. By the 11th her blood counts had improved sufficient for the next two sessions (11th & 18th April) to go ahead, but the results were devastating to both platelet and leucocyte (white blood cell) counts. Both the April 25th & May 4th sessions were cancelled as a result.
In an attempt to make up progress, a chemo session has been arranged for Monday 6th May. She is to have a blood test today (May 4th), and once the results are known a decision will be made whether Monday’s session can go ahead.
SOME GOOD NEWS
Generally, my wife is bearing up well. Her appetite is positive, and though energy levels are low, she remains upbeat despite further hair loss. She has gained a small amount of weight.
At our last meeting with the oncologist on the 16th April we learned that analysis of her tumour had revealed a mutant gene within the cancer cells. Not to be confused with a genetic family link (for which she was tested, but which came back negative) this is an unusual occurrence and means there is another treatment available in pill form. It is not chemo, but it can have similar side effects. However, it has been shown to reduce the incidence of cancer recurrence from 72% to around 30%. Recurrence of the disease following treatment for stage 3 and stage 4 ovarian cancer is one of the main causes of fatality.
We understand she must take this pill for two years, but first has to complete the chemo course she is on. How much longer that will take is entirely dependent on how it effects her blood count.
UPDATE – MONDAY JUNE 3RD
The May 4th chemo was cancelled, as was the following week’s session. The chemo chemicals are playing havoc with my wife’s blood cells. Platelet production has dropped right off, and her white cell (leucocyte) count has dropped drastically. It’s been considered too dangerous to continue, though after missing three weeks, she was deemed well enough to risk a low dose session on May 21st. That was her last one to date.
Today we saw the oncologist again. A chemo session planned for tomorrow (Tuesday) has been cancelled, but they hope her stats will improve sufficiently for a session on Wednesday, following yet another blood test tomorrow morning. A CT scan is to be arranged within the next couple of weeks.
Originally it was decided that post-op Mrs RJ would have six to eight weekly chemotherapies. Then the figure of nine was bandied. We are now into the twelfth week since they began and to date she has had only five, and most of those have been of reduced strength.
She first visited our family doctor on May 30th 2018, with symptoms of a possible colonic problem. She began pre-op chemo on November 5th last year after pre-colonoscopy scans revealed it was ovarian cancer. My wife has been suffering this dreadful disease, and its debilitating treatments, for just over one year.
Sometimes it is hard to believe it will ever end.
UPDATE – TUESDAY JULY 9th
It’s been sometime since I last updated Mrs RJ’s progress, but there’s been little to report until now. Chemo’s continued weekly on June 5th, 12th, and 19th, and she received a course of five injections following each session, to keep her blood stats up. This seemed to work, but following the last chemo her stats fell drastically again and she became quite ill for some weeks afterwards. Also, her hair, which had begun to grow again after her pre-op chemos back in December 2018, has now fallen out again.
At a meeting with the oncologist last week we were told all chemo was now finished, scans were negative, and she was to rest and recuperate for a month before seeing the doctors again on August 13th. Then they would decide if she was well enough to begin the Lynparza treatment, consisting of four pills daily for two years, hopefully, to prevent recurrence.
At present Mrs RJ is in good spirits, though very tired. We are both nervous of her taking the Lynparza given the sometimes horrific, possible side effects, but as ovarian cancer has high recurrence rates it would be unthinkable not to try.
I will update her progress as news becomes available, and we would like to thank all those readers who have been so supportive of her.
UPDATE – THURSDAY 31st OCTOBER
It’s now been over three months since the last update here. Mrs RJ has continued with the Lynparza pills twice daily and so far the hospital is pleased with her progress. Her hair is slowly beginning to grow again and side effects from the treatment have been light and easy to deal with.
One problem has been in treating her rheumatoid arthritis, as the medication she was on (Methotrexate) cannot be taken in conjunction with Lynparza. She has needed to continue with Prednisone and is slowly attempting to cut down on dosage. Originally it was at 40mg daily. She is now down to 10mg, and the doctors are hopeful she can progress down to 5mg. We will have to wait and see.
Her next oncologist appointment is on November 13th.